When Your Smiling

Kiya has started to smile. It is so fun to see her little face light up. She wakes up so happy in the morning and gives us a big grin. Monday we had a surgery consultation. It looks like we are going to have to have yet another surgery. This time she will have a gastrostomy tube placed in her stomach so that we can feed her directly and bi-pass the throat area. It is a more permanent solution for slow feeders, although it can be removed when she is eating orally. The surgery will last about an hour and we will spend a couple of days at Primary Children's hospital. Part of that time will be spent training me on the new system. It has several different components than the NG tube that she has now. I am a nervous! I am not excited to be spending more time in the hospital. I am really sad to have her inti bated again. She absolutely hates that tube down her throat! Hopefully she can be breathing on her own again shortly after the surgery. The doctors want us to do a nissen which is where they wrap the stomach around the esophogus. Matt and I have decided to only do the g-tube as we don't want to change her anatomy unless its completely necessary. Please keep praying!

Sometimes Kiya isn't too sure about her brothers.

This is a quintessential Mason face and I just had to post it for all to see. He has often been referred to as "the side talker" and "Popeye." I am sure he will keep little sister laughing and raising her eyebrows. Things are going pretty well. As soon as the sun decides to stick around we will be hanging outside a lot. Monday we have a surgery consult to look into having a G-tube placed. It is a more permanent way of feeding Kiya that causes less irritation to the nasal cavity and hopefully increases her desire to eat orally again. She will no longer accept anything by mouth. I am definitely not excited about the prospect of another surgery. We are tyring to do what we think is best for her. The NG tube isn't meant to be a long term solution. I guess I was just hoping that after we brought her home from the hospital she would eat. Patience is a hard thing to learn! Other than her feeding things are going pretty well. Her head is doing great and she is a happy baby. She is SMILING! this is not only fun for us, but a developmental milestone that we are happy to reach. We have occupational therapy and feeding therapy coming this week to check her progress. As her daddy says "they better say nice things about her." He gets pretty mad if her doctors and therapist don't comment on her cuteness. This is not usually a problem. Her is hair is growing like crazy! You can no longer see the incisions on her head. She weighs 11lbs now! So excited that she is growing despite throwing up several times a day. Some of the awesome women in my neighborhood are helping me with milk supply to feed little Kiya. There are such great people in this world! She does not tolerate any formula. We have tried five different kinds including Elocare which is already digested and meant for babies with severe intolerance's. Hopefully as she gets older her stomache and everything else will mature and become stronger. Then she can eat anything with sugar in it like her mama.

New Pics

"Choo Chee Kiya"

Lex has lovingly named Kiya "Choo Chee" Kiya. Try and visualize him saying it in more of a high pitched squeal than a normal kid voice and you will get the full effect. Things are going pretty well. Yesterday we had an upper GI study to watch food go through Kiya's digestive tract. Luckily they did not see any hernias which had been a concern. There is some definite reflux issues caused by her NG tube. Right now we are frantically working to try and figure out what is causing her to vomit three to five times a day. Not sure if it is an allergy, or an anatomy issue. We also had some blood work completed recently to see if we can pin point a specific allergy. Tomorrow we have immunizations and her food therapist is coming. I need a food therapist to tell me why I cant stop eating ice cream for breakfast!

Big Day Out

Kiya experienced her first stroller ride on Saturday. It was warm enough to take her outside well covered. It felt great! It's been five months since I have really been outside. We took the boys and went to the park. It was so nice that we kept on going to the bike path. Kiya really seemed to enjoy it. I thought she would sleep the whole time, but she stayed awake and peered through her little stroller at everything. It was the closest I have felt to "normal" in a long time.

We have been having some fun in between all of our doctors appointments and medical worries. It hasn't taken long for Grandma "Squishy" to bond with Kiya. I am nervous for the wild motorcycle rides that I am sure are in the future because of this, but if left up to me Kiya would probably spend her life wrapped in a protective layer of toilet paper. Ha- everyone thought I was anal before. Lex is maintaining his role as a responsible and loving big brother. We had our neurosurgery appointment and they are happy with how Kiya's VP shunt is healing. I told Lex that the neurosurgeon was a brain doctor so when the doctor came into the room Lex said "excuse me, Doctor Brain" then he proceeded to ask the doctor if he sanitized his hands because he was touching Kiya's head. Then Lex made Doctor Brain show him some pictures of the inside of Kiya's brain. She is lucky to have such a stickler for a big brother. Our neurosurgeon was pretty impressed. Mason is actually a great big brother too. He does tend to forget she is on the floor during his wrestling matches with Lex, but he really is careful with her. He always touches her feet and says "its okay sweetheart." They are really going to protect her. Yesterday I went to a quack of a GI doctor. I waited for an hour to get into the appointment and then he spent his entire 10 minutes with us talking about himself. The guy may know how to deal with doo doo, but not people. Needless to say I don't have much to report because this guy really didn't help us. We will be having some tests done soon to see what kind of aspiration Kiya is having and then we can have a better idea of treatments from there. I have dreams of her eating someday. I cannot believe how much I took for granted with my other kids. Friday we have another eye appointment and I am really hopeful that this will be the magic one where her retinopothy is resolved. Can't wait to show my little angel off to everyone. The pictures really don't do her justice. She has deep blue eyes and so many of Lex's features. She is dang cute! Love you all, report back soon!