From Kiya

I finally got my grandma to quit crying long enough to update my blog-(I’m still learning how to eat—give me a month to learn to navigate a keyboard!)
I want my dearest parents to know how much I love them. My devoted parents made sure that I never spent a day in the hospital by myself. For three months and four days, they went without sleep, traveled 100 miles roundtrip to PCMC, juggled their schedules and lives, advocated for my healthcare and worried about me. My parents said so many prayers and cried so many tears on my behalf. They sacrificed so that each day I could feel the comfort and peace that came from their love. I’ve always known that I was going home to a very special family. I know that my parents will be my support and comfort for life. I’m very lucky to be blessed with them.
Thank you to my brothers. Lex and Mason. Every time they said their prayers, they blessed me to get better. Lex blessed me to get good blood and learn to eat. He blessed me to come home.
I have an incredible support group of family and friends. Extended family and friends from all over the United States, prayed and fasted on my behalf. They brought in meals, tended my brothers, and offered kind words of encouragement. I’m here today because of the outpouring of love that so many people have already shown me. I know as I face the challenges of life, that family, neighbors and friends will be there for me and help me on my way.
The amount of gratitude I feel for all of you is inexpressible. Your many kindnesses, your prayers, your positive energy, your encouragement was felt by me. You were a mighty force of strength, love and healing. I will always be grateful to you.
I started life out rough, but I also started it with very great people that I will cherish and love forever.
Thank you Heavenly Father for all the angels that attended me on both sides of the veil.
Thank you.
Thank you Mom and Dad. I love you.
Love,
Your Angel Baby
Kiya

To Kiya

Little angel you are home. This morning I looked over and there you were and oh how you belong. I promised you Wednesday night that I would be there when you woke up in the morning. It was great to keep my promise. You have worked so hard and you have done so much. You must have known how much we wanted you. I cant wait to show you how much we love you. You don't seem to care that the medical world doesn't think you should be here. I love how you constantly prove everyone wrong. I cannot wait to learn from you and to see how will change this world. I know you will be our teacher. We have said so many prayers for you and our prayers have been answered. When we arrived home on Thursday Grandma Squishy had decorated the house with balloons and a sign that said "It's A Girl!" It was great! It is so great to finally celebrate your birth. Lex and Mason were so excited to meet you. Lex held you and sang you a song. Mason agreed to have his birthday a little early so we could celebrate your arrival. Your daddy and I love you so much. Dad is like a pile of melted butter when you are arround. To feel happy again is so great. We have really missed that. There was a time when we weren't sure if we would be able to bring you home. Now we have you in our lives and our gratitude is immeasurable. I rocked you in your pink chair last night. I sang to you and my eyes filled with tears. O Lord my God how great thou art! Now the door to your bedroom stays open. Thank you for fighting to be with us. We love you more than life itself.

Love
Your Family

A sweet homecoming

What a remarkable day Thursday was for the Banzhaf family...Kiya has finally arrived at home! So far, all is well and everyone is adjusting well. We have all anticipated this day since that unbelievable October weekend and are hopeful that Kiya will continue to progress so positively. She is nothing short of a living miracle and her health today is a tribute to many heartfelt prayers and her strong will. We love her so much and can't wait to see her in a few months when she is able to have visitors. We love you Banzhaf family! Our hearts and prayers are still with u on your courageous journey! Love- aunt steph

Kiya's Room

For those of you who have been asking to see Kiya's room

Coming Home!

Great news! Our long 14 week journey is about to end. The doctors told us that Kiya can come home on Thursday!!! I am rooming in at the hospital tonight to learn how to feed her through a pump. She is still not bottle feeding, but I assured the doctors that we could work on that at home. She will be sent home on NG feedings and we will hope and pray for progression on her oral feeds. We are so excited! We are a little nervous also as she is going to require some extra love. We want to do it right. I think Matt and I are a little upset that they wouldn't let us borrow one of the NICU's expensive monitors so that we can keep track of her heart rate and sat's. I guess we will get used to watching her instead of a screen to tell us how she is doing. I cant wait to wake up on Friday morning with her next to me in her bed. I wont have to make an hour drive to the hospital and hope that she has a good nurse that day. I wont have to leave her at night. I will be her nurse and treat her like the princess that she is. Her surgery site is healing well and the shunt is draining at the rate that the neurosurgery team was striving for. I will be able to bathe her on Sunday after a long stretch without a tubby. I love my little baby, but she is getting a smelly neck. I cant believe this day is finally arriving. I have dreamed of it for so long. I cannot wait to have my family together in one place. I can't wait to see Lex hold Kiya for the first time and rock her like he has wanted to for so long. I finally get to open the door to her room without sadness. I am so thankful to God for her life and progression. Thank you to all of our wonderful family and friends who have prayed and fasted for our Kiya to come home. Special thanks to my mom and dad who have spent countless hours tending, running errands, cleaning, doing laundry, cooking, driving, giving blessings and drying my tears. I could never have made this journey without you. I am so blessed to have been born to goodly parents. We would also like to thank Matt's parents for all of their love and support. Unfortunately Kiya cannot have visitors for three months as per the hospitals recommendation. We cannot wait to introduce everyone to our sweet Kiya and finally get the opportunity to show her off. Once again, Thank You, Thank You, Thank You

Surgery

After finding some troubling news that Kiyas Cerebral Spinal Fluid (CSF) wasnt draining properly the doctors (we actually trust) decided that there wasnt much hope of the CSF draining on its own. So to make a long story short we had a shunt surgically put in her head to drain the fluid. A shunt is basically a small tube that goes inside her brain to drain off the excess CSF. The tube goes under her skin behind the ear and into the stomach where the fluid is absorbed. They left plenty of coil in her stomach so as she grows the tube will still be in her stomach. The surgery went well the doctors say. The risks with a shunt are primarily infection and blockage. There is a 5% chance of infection. If I had a 95% chance of something positive happening in almost any other area I would be happy, but its definitely 5% higher than I feel comfortable with. Also there is a 40% chance of blockage occuring in the tube. So basically this is a lifelong process where there might be adjustments or revisions that will take place. The pros are obviously that her brain can get rid of the excess fluid allowing her brain to develop better, hopefully help her eat better, not have headaches, and of course not have her head continually increase in size. I just pray that she wont get any infections from this and that it will get her on to where she can heal and live a happy life. Kristen is with her now as she has been waking up from the surgery. She had been intubated for about 24 hours and has just been extubated. Which is having a tube put in her lungs to breath. Very uncomfortable and agitating. So we are happy to have that out. Kristen has been there making sure she is as comfortable as possible and getting the right amount of pain medication. This has not been fun for Kiya but hopefully this is a big step to getting her home where she can be held all day and night by mom and dad. Thank you all for your support and keep her in your prayers.

P.S.
She is freaking adorable.

Getting Bigger Everyday

Update

Sorry the updates have been few and far between. Things are going well. We keep sending our positive energy to Kiya so she can come home. We have stopped tapping for three days now and she is doing well. Neurosurgery keeps coming by to check her fontanel and they are happy with it. Eating is an issue as she is mostly still fed via the feeding tube. She is, however, almost 7lbs! She has her mommies double chin. What a cutie! Occupational therapy works with her daily on feeding and we will do a swallow study soon to make sure everything is moving correctly.
I am really wanting her home. Not so sure about January, but we will tell her she can do it. Many a baby has gone home since we have been at Primary Children's. I am starting to covet my neighbors baby going home. In truth I wish there weren't any kids at that hospital. Kids shouldn't have to get sick!
Lex wishes his sister was home daily. He thinks that the "ridiculous" nurses are keeping her there. That is what he says. I have tried to explain otherwise. I keep adding more and more Scriptures that are comforting to me on her bedroom door. That way when I get sad that she isn't in her room I can read them and remember God has a purpose in all this. We have seen many miracles and I have a feeling we are yet to see more. Kiyas very existence is a miracle. So many doctors have later admitted that they didn't believe she would make it. You go Kiya! She is showing all of them that with God anything is possible. I have so many things that I look forward to doing with Kiya. Mostly just us being together as a family and not having to leave her everyday. She is awake more now and it is getting harder to put her in the hospital crib when she stares at me as I am leaving. I am going to make up for so much lost time. Right now I am decided on what sling to get so that she can be permanently affixed to my body when she comes home. I am not kidding! She is not leaving my side. Thanks again for all of your much needed prayers and support. They are working!