Prayers & Praises

prayer requests:  for endurance to stay positive for the next couple months that she remains here, for kinley's esophagus to continue to grow (the doctor said that eight weeks out of the intitial surgery is the very minimum and it's likely it'll be longer till her second surgery), for the nursing staff and for the physicians.  

praise: the lord provided a place for me to stay for the month of february!!  it's a place that I'll likely be able to stay on the weekends in march and then again in april if she is not out yet.  i know the homeowner and it's such a blessing to be able to stay with them!  also that my maternity leave has worked out to accomodate kinley being down here and the time frame were working with.  and last but not least for all of the support and continued prayers that we are getting... the greatest blessing of all!

From Amanda

Kinley Barbara is a miracle in the making.   

I was only able to be at the hospital with her this morning because I had a doctors appointment and needed to get other things taken care of in SLO.  I cried... almost the entire way home.  I have never felt so unconsciously drawn to another human being.  It's like a strange magnetic pull and I just don't feel right when I'm too far from her.  I'm sure most parents feel the same way, and I'm also sure her situation makes that pull a tid bit stronger.  Anyway, I was away, my mom was with her and I missed her first "stretching".  Missing that is comparable to missing a first lost tooth, or first time pottying... to me at least.  Today marked the first day of her serious progress towards coming home.  And it was beyond successful.  The "stretching" involves a couple things.  Slight sedation via codeine and tylenol, removal of her aspirator and a weighted rubber tube pushed down into her esophagus.  The tube is pushed down so that there is enough tension at the end of the esophagus to stretch it very slowly and then an x-ray is taken to view the results.  Eventually the esophagus will be stretched enough to easily attach it to it's bottom half, which will be her next surgery (and hopefully her last).  It takes about ten minutes total.  My mom said that the doctor was thrilled with how much it had stretched... surprised even.  The last two weeks have seemed to be a surprise to everyone.  Nurses, doctors, us... we are all so amazed at how quickly she is healing.  The day after I was able to hold her for the first time (which was only a week after her first surgery), a pediatric physical therapist came in to teach us some exercises that we could do with Kinley to get her moving, and building strength... so now we get to have play time :)  She usually isn't as excited to "play" as we are, but we can't help ourselves, and she'll learn to love it too :)

We've been able to hold her skin to skin pretty often too, which is so great for bonding and developing connection with her.  It's like a natural sleeping aid.  I can't believe how quickly she falls asleep there.  The physical therapist seemed to think that Kinley will be breastfeeding by the time she goes home, and will probably be done with her "button".  That was some of the best news I've gotten so far.  We were initially told that she may have the button for months after she goes home because of mouth aversions and that she most likely will not breastfeed.   So you can imagine how relieved I was to hear her say those lovely words!

Not only is she healing physically but she's finally acting like a normal baby.  She cries, and I love it!  She definitely sticks out her little bottom lip and frowns when she's not happy about something... OH and she sucked her thumb today!!!  Never thought I'd be excited about that one, but I almost teared up when she did it...  When they tell you that you can never really prepare for everything as a parent...believe them :)  Everyday is a new one, and it just keeps getting better

Progress!

A message from Kinley's mom:

Today was yet another great day of improvements!  She's only getting breast milk now, which means she is getting those cute little baby fat rolls!  She is still a teeny tiny baby when I hold her, but compared to what she looked like only a week ago it's like black and white difference... she doesn't look the same at all...  She is free of all her wires, tubes and plugs except for the "button" and her aspirator.  She is able to control her body temp really well on her own and she is having lots of bowel movements!  She was moved out of the incubator today and put in a crib.  I can bring in a mobile and some of her own clothing so that it feels more like home... That's a great feeling!  I've been holding her since yesterday and the feeling of having Kinley in my arms is like nothing I've ever felt before.  I keep staring down at her in amazement that she is mine... how in the world does something so perfect develop in 9 months?  She sleeps like an angel, but I like to think that she sleeps even better when I'm holding her... She makes the funniest faces when she's sleeping, I just giggle. Everyone comments on how quick she is recovering and I tell them that there are a lot of people praying for her.

The doctor that did her surgery, Dr. Kashen, came in today to check on her.  He said she looked great, he was very pleased... he also said that she'll need to stay in Santa Barbara until her next surgery because he wants to be close to monitor her himself.  As hard as it is to know that she won't be able to come home for another 2+months, I totally agree with him.  I want her to be safe, and they take amazing care of her here.  I'll definitely be driving a lot in the upcoming months... I am going to go back to work, maybe after my mom goes home, so I can save my maternity leave for when she can come home.  So I'll be coming down here every weekend and a couple times during the week.  It's hard for me to be a block away from her now... what am I going to do when I'm an hour and a half away?

I hope that this time goes by fast, but I also hope that I am able to take in every moment.  She'll never be this small and innocent again and even though I can't wait for her to be a chunky crawling baby I really love her sweet calm self now.

Days are blurring together and the time flies by...

Mama Manda finally holding Kinley!!

Bundle O' Joy

Message from Mama Manda

Ok... Kinley updates.  There are SO many!  She's very interested in getting home soon... I'm glad we're on the same page :)

She was taken off of her sedative on Thursday night.  She was given morphine for the pain, and it was to be administered every four hours or as needed.  Well she's a tough one and didn't need that strong of drugs, so after one dose they dropped her down to Tylenol.  Because she did so well off of her drugs they were able to take the ventilator out and she's breathing on her own.  And breathing really well might I add!  Her O2 levels are consistently between 98-100.  They've taken out her catheter and she had her first bowel movements yesterday which means that she could start recieving breast milk.  They removed the long tube that was draining her stomach fluids and replaced it with a short "button".  Through her "button" she's gotten 3 feedings of breast milk so far!  And she loves it :)  She definitely goes under a food coma after... She's moving more frequently and opening her eyes when the billy light is not one her.  Her bilirubin levels are dropping consistently and she should be able to go without the light by tomorrow morning.  

And the biggest most anticipated update... I'll get to hold her FOR SURE tomorrow after they remove her side drain.  The doctor came in today and told me that he'll do that for sure tomorrow morning.  Besides being able to hold my baby girl for the first time since her birthday is that I can put a little breast milk on my pinky and let her suck on it.  That way she has a better chance to make a positive connection between a full tummy, a warm chest, something sweet in her mouth and sucking.  All very important things she needs to avoid getting mouth aversions, and a challenging rehab process after she's released from the hospital.

Prayer requests.... that my insurance company will pay for her transportation back to SLO for the waiting time before her next surgery.  That the lord will heal her quickly and that her upper esophagus will grow faster than they planned.  If it does, she can have her second surgery sooner and come home sooner.  Pray that she won't develop mouth aversions, and that she will be able to keep her sucking reflex and hopefully her swallowing reflex too.  

Praise... for all the amazing support.  This situation has been so inspiring and humbling.  I really am amazed at the amount of people that have shown love to us during this time.  Can't even tell you how much it has helped me get through the days so far.  For the provision of a place to stay through the weekend at the hospital cottages.  The manager Mike has been more than gracious with us.  For the nursing staff and physicians.  Such an amazing group of intelligent people with huge hearts.  I feel 100% comfortable leaving Kinley with them.
-Amanda

Kinley B's Story

As many of you know, Kinley Barbara Snyder-Freeman, was born January 14^th. What most of you don’t know is that she was born with a congenital esophageal disorder, or Tracheoesophageal Fistula (the esophagus is not attached to the stomach, 1 in 4000 babies are born with this). Amanda’s doctor noticed an abnormality in an ultrasound 3 weeks ago. There was excess amniotic fluid, her stomach was not identifiable and her abdomin was underdeveloped. Amanda’s new parent jitters quickly turned into fear and sorrow for the complications that her daughter would have to endure. A follow up ultrasound the day before Kinley was born showed that her previous problems were unresolved. The doctor sent Amanda to Cottage Children’s Hospital in Santa Barbara, where they would be better equipped to handle Kinley and the surgery that would be necessary to fix the defect. The doctor also requested that Amanda be induced the following morning. Kinley, being the strong-willed little girl that she already is, decided to come on her own time- we arrived at Cottage on Friday night around 6:30pm (12 hours before she was to be induced), and at 7:30pm Amanda was 6cm dilated. The next 10 hours of natural labor showed strength and courage like I have never seen before. Amanda remained calm and endured the pain of labor without any medication (even though I offered the option about every 5 minutes). And at 5:49am, immediately after Amanda cried “where is she?!”, Kinley was born! She was so cute, even with the newborn look going on. She was placed on Amanda’s chest and without even opening her eyes she reached for Amanda’s face! She knew exactly where her mom was.

Kinley’s surgery went well, but through that surgery the doctor discovered that they need to further stretch the esophagus over the next eight weeks and then operate again. The typical results are very encouraging and the long term effects are minimal when it is discovered early on like this. Amanda is handling it extremely well, her bravery and fortitude are nothing short of inspirational. She has given the situation to God and she knows that he is in control!

Kinley is looking at at least 12 more weeks in the Neonatal Intensive Care Unit. Amanda will be returning to work in San Luis Obispo. Her plan is to work during the day and be with Kinley at night. My hope is that as Amanda’s friends and family we will be able to help her and Kinley during this hard time, help to ease their burden. Any amount of money, any words of support, any prayers for strength and recovery help. Amanda is not asking for this and she may scold me for doing this, but we have a chance to support and love her when she needs it most. And if you know Amanda, you know that she would be the first person to help anyone out if they were in this situation. If you are able to give in any way, it is very much appreciated. It is well deserved as Amanda is an extremely hard worker, and all donations will go to The Kinley Barbara Foundation with the purpose of handling immediate medical costs and long term hospital fees. These surgeries and hospital stays are going to be paid off over the duration of Kinley’s life, there is no quick fix for that, but we can help little by little right now.

Thank you for reading. Stay tuned for more updates on Baby K and Amanda!

-Kial

I’ve attached websites that better explain Tracheoesophageal Fistula.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001957/

http://en.wikipedia.org/wiki/Tracheoesophageal_fistula

http://www.childrenshospital.org/az/Site1775/mainpageS1775P0.html

She's awake!

Mama and baby