update for the bloggy blog

Hey!  So much good news to share...

Kinley had her surgery last wednesday the 14th.  It was more complicated than they expected, but the doctor was able to repair her.  He was even amazed that it came together so well.  A miracle.  She was on the breathing tube for a day, and they decided to take her off.  She did ok, but wanted to keep us on our toes a bit that night... She was re-intubated.  The NICU pediatrician decided that we''ll leave it in until she is absolutely ready to get it out, which was Saturday morning.  I came in really early that day and was just hanging out with her.  She woke up around 9 am and was just happy as could be, staring at her cards that I put on top of her incubator.  The doctor cleared her from the venitilator.  As soon as the tube was out, she started chatting with us!  Everyone came over to talk to her, and she had tons to say!  She stayed like that until noon.  She also got her first feeding of breast milk since the surgery, through her button still, and then had a bowel movement right after.  We also know that she has been swallowing because she had a lot of mucus in her pooh.  I was so excited about that... I get excited about everything with her because it's all amazing!  Everyone continues to compliment her on how well she is doing, and how quickly she's recovering.  I have no doubt that she is going to be a strong resilient little girl with a love for life.  She has the sweetest disposition and looooves people!  She'll stare and talk to anyone, as long as they talk back :)

The NICU peds told me today that if everything goes smoothly she'll be home by next monday!!!  She has a dye test tmrw (monday) to see if there are any leaks.  If not, then she can start feeding by mouth!  Then she has a kidney test on tuesday, and after that she's in the clear.  We just have to keep practicing eating by mouth and gaining weight consistently before she gets discharged.  I'm praying, and asking that you pray too, that she is able to have her button removed before going home.  That thing scares me, and it's uncomfortable for kinley too.

She's almost home!  

-Amanda

Updates from Amanda

The doctor told us today that Kinley has accomplished both goals that are needed before she has her second surgery!  She needed to reach 3 kilos (6lbs 6 oz) which she did last night by weighing in at 6 lbs 7 oz and her esophagus needed to be under 10mm away from her stomach... she's at 8mm!  She is cat napping and playing all day, and sleeping long hours at night!  The nurse told us she slept 5 hours straight the other night...  I'm not sad to say that I missed out on the sleepless nights of parenthood!

Dr. Kashen said that we will talk about surgery dates next week after he does her stretching.  Prayers for a sooner than later date and a fast recovery!  Now that her personality is coming out I am even more excited to take her home... I practically climb into her crib sometimes trying to snuggle her.

Also please pray for the other families that are in the NICU.  Most are in and out in a couple days which is great!  There are two other families here with babies that will be here for longer than Kinley.  I can't even imagine the stress of adding more time to our stay, so please pray for them too.  The babies names are Daniel and Mia...

Words can't convey they gratitude that we have for all of your prayers and support.  We wouldn't have been able to get through this with a positive attitude if it wasn't for all of you...  We are so blessed to have you in our lives!

 

Amanda Snyder

Amanda's Update!

Her bath video... like I said, everything is to die for cute these days...

http://youtu.be/gyGT4_tc07I

So it's official... I've become one of those parents that think every little thing my baby does (or even doesn't do) it's to die for cute.  I'm tempted to post all the videos I've taken on youtube for the world to see, but then I realize the videos aren't all that exciting and I'm just obsessed with my daughter.  I also call her princess... never thought I'd do that either.  Interested to see what else I'll do that was obnoxious just three months ago.  Although I will vow to never ever put a giant flower or bow on her head.  Maybe a medium one, definitely small ones, but never ever a giant one...

Kinley is (surprise!!) still doing fabulously.  We had a little bit of a tough week dealing with the placement of her repoggle (the tube that sucks out her saliva so that she doesn't choke on it).  When she gets fussy she cries (shocker), and the tension in her throat when crying causes that thing to shoot out.  Problem is, that when she cries also produces and excess amount of saliva.  So combine absent repoggle with excess saliva and you get a baby that is even more unhappy because now she has saliva hanging out in her throat, and no one likes that.  So you can imagine I'm sure the difficulty of that.  We have been able to figure it out though, and having the tube down the side of her mouth is the best solution.  It's working so far, and I pray  that it continues to work, because we have at least 4 more weeks before her next surgery.

She turned one month on Saturday too... so unbelievable how much time has already gone by.  Monday will be the half way mark to the hoped for time of her next surgery.  Dr. Kashen did her third stretching yesterday and said that she is still doing well.  When she was born the distance between the two ends was about 4 vertebral bodies away, it's now only 3 away and Dr. Kashen wants it to be at the most 2 away before doing the surgery.  Ideally he would like for the two ends to be overlapping so there won't be any tension at the connection site, but he said that's really unlikely.  My first thought when he said that was, "I'm going to ask people to pray for that... so far the prayers have worked, and that would be a really awesome thing to pray for!", so pray for that please :)  He'll wait the full 8 weeks even if she gets to 2 vertebral bodies next week, just so that he can get the two ends as close together as possible before surgery.  Makes sense to me.

She had her first water bath today (Saturday) and I was nervous since she can't stand diaper changes or the usual wipe downs that she's been getting.  But Gail, our great nurse, put her in the warmest water and Kinley was almost drugged by it.  "Luke warm water is horse-shit" Gail says.  I love Gail.  I wouldn't want to take a bath in luke warm water either... and neither would Kinley apparently.  So our first water bath was a very pleasant one :) 

Only 3 short weeks before I return work... put that on your prayer list too.  That is going to be so tough!  But if I were going to leave her anywhere in the world it would be here.  Cottage NICU is amazing, and the nurses have become a sort of family for me here.  They bring me food, help me clean stuff, give me mothering advice (life advice sometimes too) and have really bonded with Kinley.  They treat her like she's one of their own... it really is amazing.

Oh!  And she's gained 1.5 lbs!  She's a whopping 5.9 now :)  

UPDATE FROM AMANDA-Thankfully there isn't a whole lot to update on.  She is stable and just hanging out until her next surgery.  If things keep progressing as well as they have she should have her surgery sometime in mid March.  Until then her daily schedule in the NICU consists of feedings every three hours, sleeping in between and play time when she's awake (which has been more often lately).

Her day also consists of a ridiculous amounts of diaper changes... she poohs while we are changing her, she actually pooh'ed on the nurse and her bedding today which gave me some much needed comic relief.  I'm still laughing about that one.  We usually change her before her feedings (and yes we're helping with the dirty work too), but it's not uncommon to have to change her soon after her feedings too.  I hope this is normal, the nurses say it is.  And I also hope her bowel movements reduce in number by the time she goes home.  I'd much rather be rolling around on the floor with her than trying to hold back her bicycle kicks during diaper changes.

Ok, enough about pooh...

She had her second stretching the other day, which I was able to watch.  It was by far the most difficult thing I've watched.  Seeing your baby cry and not being able to do anything about it is beyond painful, like heart hurt painful.  But they all reassured me that it's not painful for her, that she's just crying because of the excess saliva that causes her to choke.  The nurse was there to suck out the saliva, but ok... nice try, it didn't really help.  As soon as they were done they were able to give her to me and she calmed down quickly.  She fell asleep fast because of the drugs that she was given for the procedure, and of course because she was in my warm loving arms...  :)   My concern for her was soon relieved when the doctor came back and showed me the x-rays.  Her upper esophagus stretched to her 5th thoracic vertebrae last week and this week it was down to her 6th!  Dr Kashen happily stated that "things were going better than expected" :)  :)  :)

Even though they do the stretching, they think that her growth will have the most effect on her esophagus lengthening so they have started to put breast milk fortifier in her food.  This gives her an additional amount of calories each day.  She wasn't putting on weight for a couple days, but since they've fed her that she has gained 3 oz in 2 days... She weighs 4.13lbs now :)  

We have been spending almost all day with her in the NICU since her birth.  Nurses are starting to kick us out to get some fresh air and "renew our spirits".  One day I listened and went toy shopping for kinley... got her the cutest monkey finger puppet/rattle (her dad calls her a little monkey, so I thought it was appropriate) and some really great black and white flash cards with sea animals.  The physical therapist said that babies see black and white very clearly and it catches their attention.  And I'll admit, it was good for my soul :)

She's getting lots of tummy time but only lifts her head when she's mad... but she tends to enjoy tummy time so she usually just hangs out and looks around, not much movement going on.  She LOVES to kick, and tummy time sometimes turns into a yoga sesh (she's a very good downdogger).  

So this is our life for the next couple of weeks... long road ahead of us, but so far so good.  There is still so much for us to learn about each other and endless bonding to be done. 

I want to say thank you again for all of your prayers and support!  The prayers are being answered, and the financial support that we've received so far has been extremely helpful!  We gave $425 to the cottage hospitality fund for letting us stay in their homes for 17 days.  I'm going to give $500 to the home that I will be staying in for the month of Feb to pay for utilities, food and as a thank you for allowing us to invade their space for so long!  They've also opened up their home to us during March, when we will be coming down on the weekends and for the time she'll be here in April.  Gas has been a huge cost for us, especially for Trevor.  He is still working and because he runs his own business he needs to go back to SLO often.  So he's been commuting A LOT!

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