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!!!