Laynie update...

I thought my last post was long...... this one is even longer.

A lot has happened with Laynie since my last post. We went down to SLC for a surgical consult on her choanal atresia (nose surgery). The plastic surgeon noticed she was having a hard time breathing and he thought there was a problem with her airway. He sent us right over to see the ENT doctor. He didn't think the blockage in her nose would keep her from breathing, because she has another nostril and a mouth that is open all the time. Dr. Park (the ENT) did a scope down her throat and noticed that her vocal cords only opened a little bit. He wanted to do another scope that looked down further (brochoscopy) but she needed to be under anesthesia. Also, he wanted to do a MRI on her brain to see if there was something in her brain not sending her body the signal to breathe. He warned us that she may have to get a tracheostomy if he didn't find anything else. At this point, both options weren't my favorite... Either brain surgery or a tracheostomy. We stayed the night in the hospital and they did the scope the next night. This was really the only day that was absolutely horrible for me. I felt like either option was bad. The scope went well. They said she has vocal cord paralysis. They didn't find anything else with the scope. They left her intubated because her airway was so difficult to get and they didn't want it to close off and then not be able to intubate her again. While she was intubated, she had to stay sedated in the ICU. The next morning they did the MRI on her brain. They didn't find what they were looking for with the breathing problems. They did find something though (so confusing I can't explain it very well). Anyways, they say she also has Kallmann syndrome. It is something that affects her smell and growth. Basically, she lacks growth hormones. It will probably affect her more when she reaches puberty than right now. Since nothing else was found related to her airway problem, the only option was a tracheostomy. The following day (Thursday) she got a tracheostomy. The surgery went well!!! They kept her sedated in the ICU for 3 more days. After talking to the doctor we actually felt really good about her getting the tracheostomy. He told us how critical her airway was and with all of her upcoming surgeries he said that would really be a problem. Also, he told us that her carbon dioxide level was extremely high and that is usually a clue that the airway is ready to close off. So now she has a great airway! Sunday was a big day. It was wake-up day and trach change day for Laynie and it was also the day that Trevor had to go home, so I was nervous to be there all alone. But, everything turned out great. She was happy when she woke up (for the most part) and the trach change went perfect! She got moved to the regular floor on Monday and then it was time to learn how to take care of her! Before Trevor left, we had been going to trach classes so we sort of knew what was going on. We also both had to change her trach on Sunday before he left- so scary! From there everything went great. She did have a fever scare, but after a bunch of testing it turned out she just had a cold! Wednesday felt like Christmas when they told us we could go home. Trevor was so excited to come get us and we were SO EXCITED to go home and SO NERVOUS too! Everything has been great at home so far. Our room looks like a medical supply store! She uses a trach mask... it blows oxygen and humidity into her trach. Our noses humidify and warm the air that we breathe, but since she breaths from her neck she needs to still breathe warm and humid air. There is also something that can be used called an artificial nose for when she is mobile. We can't hear her cry anymore and I miss it so bad. You would never think that you would miss hearing your baby cry, but trust me you do! She requires suctioning frequently into her trach and there are so many gadget and rules that I cannot even explain them all. We change her trach about once every 4-5 days. She must be much happier now that she is getting some nutrition and can breathe!!! As for the future..... I don't really know. We wanted to take a break for awhile from the hospital so her next surgery isn't until December. She will be getting her prosthesis done and tubes in her ears. Then, possibly getting her feeding tube put into her stomach rather than through her nose. Hopefully we can stay out of the hospital until then! Also, we have no idea how long she will need the trach for. It is hopeful that someday she will be able to get rid of it, but not a sure thing. Dr Park said about 80% of children get off of their trachs. So hopefully she won't need it for life.

I have to say thank you sooooo much to everyone who has helped us in so many ways! Thank you for the prayers, babysitting, money, talks, cries, food, and for just being there for us during this time! We know we could not do this on our own!

I think I have mentioned this before... but I have always had an incredibly strong feeling that I would take care of a child with special needs. Whether it be my own, adoption, helping family, etc... Laynie obviously agreed to come to earth with challenges and we agreed to be her parents and help her make it through her challenges. It is scary and overwhelming at times, but we are nothing but honored to be her parents. We are all so positive and we know that she will be okay! I have such an amazing bond with her when I look into her eyes. She makes me feel calm and comforted. I think that I need her as much as she needs me. She is such a little angel!

Once again, thank you for all your thoughts and prayers! We need and appreciate them all!

FYI: A tracheotomy and a tracheostomy are the same thing. I asked the doctor why he called it a tracheostomy instead of a tracheotomy. He had a good sounding medical explaination that I can't explain, but I thought it sounded good enough... so that is what I call it too now!!! It was kind of a joke with me and the doctors that I asked soooooo many questions.

This was Laynie when she came out of her Bronchoscopy. She was left intubated. This was definitely the hardest day while we were there. Her face is really swollen here too.


This was after her tracheostomy. She was on a ventillator and sedated for awhile so she wouldn't move around. When her medication would wear off she would go wild. All the doctors called her "Wild Woman".

We were SOOOO excited to see this little man.

Afton was so nice to bring Drake to Salt Lake for the weekend so we could see him. I missed him so much. It was so hard to be away from him for so long. Thank you mom, Afton, Dale, and Whitney for taking such great care of him!

After she woke up and we moved out of the ICU. She LOVED this fish mobile. She actually started smiling for the first time at it. I was tempted to steal it because she loved it so much. Maybe we will luck out and get it again next time we are there.


A volunteer made her this cute little poster. Primary Children's is such an awesome place!

Now please don't think I am a horrible person for this picture. This headband works wonders for a binki holder. She doesn't breathe out of her mouth anymore so I don't see any harm! Plus, she can't hold her binki in her mouth for even 2 sucks ever since she got her NJ tube so this makes us all happy!
This is the set-up in our bedroom. Talk about a tight squeeze!


So happy to be home!!!