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!