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!!!

We love our little Laynie!!!

Well this past week has been one of the hardest weeks of my life, but also an answer to our prayers. I could probably write a novel about everything that happened, but I will try to condense it into something a little shorter…
Let me start with some info on Laynie. She had troubles gaining weight and eating ever since she was born. It had gotten worse and worse. She was only eating ½- 1oz. and crying through her whole feeding. I had been told since before she was born that she would have troubles eating because of her cleft lip and palate so I thought it was just due to that.
We took Laynie down on Monday to Salt Lake to get her fitted for her prosthesis. It was for her 1st surgery that was scheduled on Oct. 18th. When we met with the Orthodontist (who made the prosthesis) he mentioned how small she was. He made a call to the Plastic Surgeon and they both decided it was best to postpone the surgery until Laynie was around 10lbs. He also set me up with a feeding specialist while we were down there. She watched Laynie eat for about 20 seconds and told me she wanted her to get a Barium Swallow Study to make sure she wasn’t aspirating. They couldn’t get us in until the next day so we stayed the night and brought her back on Tuesday.
They preformed the Barium Swallow Study with different kinds on Barium. She failed all of them. They told me that Laynie was aspirating into her lungs and she would need a NJ feeding tube (goes past her stomach, into her jejunum). Honestly, I was actually relieved because of how horrible her feeds had been. I was just happy to have her get some food and not be starving anymore. They said that we would need to spend the night to make sure she tolerates the tube well and then we could go in the morning. Also, I was no longer able to feed her by mouth and she was already hungry...
They admitted us to the hospital. She was so upset because she was so hungry and people were bothering her. It always takes so long to get anything done when you are at the hospital. She went without food for 7 hours. She was sooooo sad. We went to get the tube placed and it had to be done under x-ray. The Radiologist tried about 5 times through her good nostril and then another Radiologist came in and tried a bunch. Neither of them could get it through her nose. So they finally tried her cleft-affected nostril and got it in on the first try! We went back to our room and they decided to move us to another unit because her oxygen was so low and they thought there might be some other issues. Trevor and Drake went to the zoo and played at his aunt’s house all day while waiting for us. Trevor wanted to be at the hospital, but it was just so hard to have Drake there. They decided to drive home that night because it just wasn’t possible to have Drake there. Both of our moms were out of town. My mom was in Dallas for work and she was able to fly home the next morning. She actually flew into Salt Lake to be with me- Thank goodness!!!
Tuesday morning I was so happy to have my mom there and they also wanted to do a CT scan to see what was blocking her nasal passage. She did her scan and she was so good and still, but they said because she was sucking her binky they couldn’t see what they wanted. They wanted to do the scan under sedation. I really didn’t want that to happen so I talked them into letting us try it while she was sleeping. We couldn’t get her into a deep sleep all day. We talked to a Geneticist in the meantime. They were looking into certain syndromes that she may have because of her cleft, heart problems, and conjoined toe. They wanted to get a CT scan of her inner-ears. So it was good news that we didn’t get the scan done yet. We finally did the scan at midnight when she was in a deep sleep. She slept through it all like a champ- and I was so excited!!!
They told us that she has Choanal Atresia (basically bone is formed that blocks her nasal passage). This might be why her oxygen is so low and why she has trouble breathing while she ate. This can be fixed by surgery. Also they found some inner ear anomalies. Her tiny bones in her inner ears aren’t formed properly. She has already failed multiple hearing tests, but they said it was probably because of the fluid in her ear due to her cleft palate. She will either have to get a cochlear implant or hearing aids to hear. The Geneticist said that this inner ear problem, her cleft lip/palate, heart problems, choanal atresia, trouble swallowing, and poor weight gain are all symptoms of CHARGE syndrome. They wanted to do a few other tests to see if there are any other symptoms she may have. They did an ultrasound to check her kidneys and reproductive organs, and an ophthalmologist examined her eyes. Those tests came back fairly normal!! Horray!! We stayed one more night at the hospital to get everything all figured out and all appointments made for the future, etc…
The next day Trevor’s mom flew in from New Mexico. She came to see Laynie. My mom and Maureen drove back home and Trevor came back to Salt Lake. The doctors said that she will need the surgery to fix the Choanal Atresia first. They might be able to do it at the same time as her prosthesis surgery, but it depends on how they perform the surgery (through the nose or through the palate). This should be done in the next couple of weeks. She will see the ENT in the near future to figure out what will be done for her hearing. They also gave her the diagnosis of CHARGE syndrome. This was definitely the worst news we got. There are many major symptoms and many minor symptoms of CHARGE. She has enough symptoms to have the diagnosis. Every person varies so much with CHARGE syndrome. They may have severe, mild, or nothing at all on every symptom. Most of the major problems I have already listed, but we don’t know how her development and intelligence will be. The doctor said some people have normal IQ’s and some people are completely devastated by CHARGE. They did say that her outer appearance seems to be very mild. Only time will tell with everything! We got to come home on Friday. She has a feeding tube and we aren’t sure how long she will need it. Some kids with CHARGE don't need one at all, and some need them until they are young kids. She uses oxygen only when she is sleeping and we are hoping that she won’t need it after her first surgery. We are also happy that she will be getting all the nutrition that she needs and she will start to gain some fat rolls!
As I said before, this was a very hard week for us, but it was a huge answer to our prayers. I knew that something was wrong with her. She was miserable all day long and I felt like I was torturing her every time I fed her. Primary Children’s was AMAZING!!! I am so grateful that we were there. I am so thankful for all of our family. They were practically begging to help us. We are so lucky to have such a wonderful family! I’m so thankful for the power of prayer. Every day since she was born I have prayed for strength. I knew that I was a super emotional person and I would need a great deal of strength to make it through her surgeries. Honestly, that first day I don’t know how I made it through without anyone there to help me and a miserable baby! I hardly ever broke down into tears and I KNOW that I could not have done that on my own! I know that Heavenly Father heard and answered my prayers! I feel so special that Heavenly Father thinks that Trevor and I can take care of this little girl. I know that we will have some incredibly hard times ahead, but we love Laynie so much and we are so thankful to be her parents!
http://www.chargesyndrome.org/about-charge.asp

Our little sleeping angel




Thank you mom for coming home early and taking care of me!! Love you!
Laynie is so lucky to have these 2 amazing grandmothers! We love you both!

This is a hospital buddy. This was made for Drake to play with so he had his own hospital buddy and didn't play with Laynie's tubes. It is so cute.

Trevor was so happy to come back to see us. It killed him being away at home. I was so happy to have him come back to get us!!! We missed you as much as you missed us! It was so hard to be away from Drake that long. He had such a good time with all of his babysitters. Thank you everyone who offered to help with Drake!
So maybe we got a little bored sitting in a hospital all day...

So happy to be home!!!!! We love you so much Laynie Bug! We know you are a strong girl and we will be here for you to help you get through whatever challenges are ahead of you!!!

Salt Lake

We went to Salt Lake last week for a doctor's appointment for Laynie. We managed to squeeze in a little bit of fun while we were there.

Trevor and I love staying in hotels. We are like little kids because we think it is just a blast!

Jordan came and met us for some dinner and swimming!

Drake loves the water

Cutest bum I have ever seen

Trevor and Drake went to the Hogle Zoo while I was at some appointments with Laynie. They had a lot of fun!

Drake's 2nd Birthday

Drake had a great day on his 2nd B-Day!!!

We went to pizza- his favorite food!

He opened presents!!!Ate some cupcakes
And loved playing with his new toys!!!
Thanks everyone for the gifts and B-day wishes!!!

Our Birthday Boy Turns 2!!!

HAPPY BIRTHDAY DRAKE!!! You are 2 years old today! We love you so much and love having you in our family. Our lives became so much better 2 years ago today! We feel privileged to be your parents and look forward to what this next year will bring. We hope you have a great day! We love you! Love, Mom and Dad

2 years old- you are getting so BIG!

1 year ago2 years ago

Well, this was the cute B-Day invitation for Drake's party. We were planning on having a JuNgLe PaRtY! But... Trevor and I decided (after handing out the invitations) that we probably shouldn't have 25 people over to our house and risk Laynie getting sick. It is so close to her surgery and we just didn't want to expose her to anything! We feel so bad for not giving Drake the party that he deserves, but we will just have to PARTY, PARTY, PARTY by ourselves!!! We will make it up to you next year buddy!

WE LOVE YOU! HAPPY 2ND BIRTHDAY!

Last week's happenings!

Hmmm... it seems like every post is filled with random pictures. Here is another one...

Drake LOVES his Papa Petersen! He came over the other night and these two played outside for hours. Grandpa took him on a four-wheeler ride and Drake loved it! Drake made Grandpa take off his shoes so he could wear them. Drake knows that Papa will do whatever he wants!!!

These fall nights have been awesome. The temperature has been perfect! I wish it was like this year round. Sadly, our winter is creeping up on us :(This little girl turned 7!!!
We had a little party for her

And I think Sophie is so beautiful
I think her shirt says it all!!!!
Ohhh, I just LOVE having a girl!
The gremlins finally got a much needed hair cut

We went to the river to feed the ducks. Drake loved it- but I think he ate more bread (toast) than he gave to the ducks!
Still madly in LOVE

One last picture of some outside fun. I'm so sad it is about to end.