Thursday, September 27, 2012

21%

What is this 21% you ask???  Well that is the level of oxygen that we all breath with room air, and guess what?  My sweet baby started room air today and is doing amazing.  She had one little episode and bounced right back.  I really wish I could call and get an update from the NICU tonight but alas one of the "rules".  So, Karis is doing so well. I think she is finally the "big girl" in our area of the NICU.  It has really been helping me to hold her everyday, and that she is not just sleeping while we are there. So we have made BIG strides this week and are so thankful.

Some of you I am sure you have noticed the little spot or strawberry that has developed on Karis' nose.  At first I thought it was a mark from her cpap.  They told us in the past that Karis' face is bigger than the Japanese baby so the nose mask was tight.  Well the little spot has gotten bigger and bigger. I actually thought maybe it was just a beauty mark.  A couple days ago my sister said, have they told you anything about the hemangeomia on her face. A hemangioma is an abnormal buildup of blood vessels in the skin or internal organs.  Um actually no, they just said it is no problem.  Ok, so I looked it up and wow, I got a little freaked out.  Freaked enough that I cried the WHOLE way to the hospital that day.  So, I guess most of the time these little strawberries are already on babies when they are born, or appear very shortly after birth.  Also, something like 30% of babies have them, and they are VERY common among preemie, caucasion, girls.  Well Karis is half caucasion so, hmmmm.  Well after looking at many, many internet pictures and blogs and seeing all the worst cases, I kinda was in the "depths" if you know what I mean.  I guess in some ways I have been waiting for the other shoe to drop.  You know the one where we have some major problem with our precious little miracle. I think,  I often go to the worst case senario with good reason. It is strange to have a mixture of the "worst" Judah and how pProm affected his life, and then Karis and how she is a little miracle and thriving even with a rupture and very low fluid in utero.  Maybe I will always go to the worst first, until I give it to God.  Anyhow, this little strawberry on her face, could be a challenge to her vision if it continues to get bigger.  Also, as her Mama it is hard to think of what is could become on her face.  It could become raised and ulcerate, it could impair her vision, she could need steroids, or even surgery.  All of that is the worst, when I first started researching I just kept crying out to God, "Lord, I can't do this" "Please not this. I can't handle anymore." and on and on.  Maybe some of it is just post or current trauamatic stress.  But I do know, I could do it and will if it her strawberry is "the other shoe". But I am asking that you please pray on Karis' behalf about this.  It isn't a major organ or life threatening, but it is something that could truly impact how others see her here or anywhere for that matter.  So my friends please pray with us about this, that it would go away and not have any lasting affects.

In other news, Karis is gaining weight well and doing much better on a pump taking her food.  She is also the darling of the NICU (at least in my opinion) Not much more to say, except no news is GOOD NEWS.  And now for the pictures and video, I just love this little girl!!!
Hold me Mama!!!

Mommy and the nurses made me origami, it was good therapy for them!
One of my favorite nurses- Nurse Miyuki :)

I have some new accessories and my Mama has a new obsession!
video 
I think someone is very hungry in this video :)

Tuesday, September 25, 2012

Oh special day!

So I am just writing a quick update for everyone.  I am doing much better emotionaly this week, thank you for all of you who were praying for me.  So here are my quick points about Karis.

  • She has passed 3 lbs- Praise the Lord.  Of course she is looking chubbier and chubbier everyday!
  • Her infection is gone :)
  • Her eye test came back the same so it is not progressive.  Also what I learned today is that it is really better than we thought.  Japanese scale is stricter than American so her level 1 in her left eye is like a 0 and level 2 in the right eye is more like a 1!!!! So so thankful for this.  They will continue to check her eyes every two weeks now. 
  • This next one is a BIG BIG prayer request.  Today they are trying her ALL DAY off her cpap!!  She will just be getting oxygen in her incubator.  Please pray for her as you go about your day today.  It will be our night time, which can often be the hardest for them to not have problems!
  •  Also we finally got to hold Karis :)  Not out of the incubator yet, with kisses and all, but I am still so thankful for this.  And our nurse Yuko, said we can do it EVERYDAY- yippy!  This means when we pick her up she is awake and much more interactive.  I have to tell you I just LOVE watching my husband with her.  It is just about the sweetest thing I have ever seen.   
Well that is the very short version but I would ask as you go about your day to remember our baby girl, and lift her up in prayer!!   Here is a video, I have watched it so much, I just love our little girl, and am so thankful for the miracle she is!

Wednesday, September 19, 2012

Blahhhh

So sorry it has been a while since I last updated. I have been trying to keep very busy and have not wanted to stay home alone to much, but I think that it is catching up with me. Karis has been doing really amazing recently, she is gaining weight like crazy and is having very long periods of time with her cpap off. Usually from around 9:45 am to 4 pm.  Mostly she hasn't been having many alarms with bradys or apnea except with feeding and she has always regulated herself quickly.  But today in the NICU was hard.  Before I even went I was having a hard time.  Today I have missed Judah a lot, I just kept crying and crying even before I went.  Plain and simple their is just a whole in my heart, I will always miss him and wish he was here.  Also, Clifford didn't go with me today for the first time in weeks and wouldn't you know it is the first time in weeks we got some bad news.  Right when I walked in I knew it was bad because they had the IV line in her.  I tried to get information from the nurse but our nurse today didn't speak any English. I understood the basics though. :(  Of course I started crying, I think this made them pressure Dr Homa to come and speak with me quickly.  So about Karis, during her blood check today they found her CRP elevated just a little, and looking at her WBC she is beginning to show signs of a bacterial infection. He said they believe it is due to her getting milk in her lungs, from having reflux.  I have seen her reflux a little and I even asked about aspiration the other day to the nurse but maybe she didn't really understand. So they have her on antibiotics and are giving her milk through a timed pump to make the fluid go in slower and more consistently. Also, her ROP eye test results weren't so great.  He said she has level 1 in one eye and level 2 in the other eye.  Now this scale is actually different than the one they use in America. Anyways needless to say my sweet girls really needs your prayers.  Please pray that this infection will have been caught early and won't turn into anything major. Also, for her eyes.  I know that a part of the reason Karis has done so well is all the people who are lifting her up in prayer.  Please keep praying praying praying. As for the good news, she is gaining weight like crazy as you will see from her pictures. She is getting close to three pounds already!
Taking it one day at a time over here- Danielle
This is my favorite snuggled picture of her recently. She just looks so peaceful here!
Yippy! I am 2 months old today.
In case you wondered if I am ALWAYS happy, Nope, I didn't even like my sweet outfit at first. But then....
I decided I was the cutest baby in the room with my new clothes!!  Thank you Ms. Masami for my special outfit with my name on it.  



Tuesday, September 4, 2012

2lbs and counting!

Yay! She finally made it to 2lbs and is looking so much bigger.  Actually she is 2lbs 3 oz and gaining. I love seeing her baby cheeks and sweet little face finally doing all those cute little baby things she had been finally doing with her mouth.  So I started this post days ago, but blogger lost most of it and then I just couldn't face the frustration of getting the pictures and stuff on here.  I am not that great at computer stuff or blogging, SORRY! The past two weeks have been very stable for Karis, she is still doing fantastic on her CPAP with only using Very low oxygen 21% almost always.  Her feeds have increased to 11.5cc per feeding and she is tolerating it pretty well.  She does have some issues still with having her alarms go off for Brady's and Apnea, but that is just a part of her lung development or lack of it

Next week Karis will have her eyes checked for ROP which is an eye disease that is common among preemies.  It can range in levels from 1-5.  If your interested you could look it up, but basically at its worst the retina will detach.  The levels have to do with how the blood vessels are forming.  From what I have read the test is not very nice and is a bit painful to the babies :(  Please pray for no damage to her eyes!  We have seen miracles before, I mean geesh she is just a bundle of little miracles. So my friends pray pray pray with us!!!

Also, we are trying something new soon. We have been researching things that may help her with comfort and brain development since we are not there very much (not my choice, but hospital rules) and she in not allowed to be held yet. As I have been researching things about micro preemies, I have found that while she may be doing well on the outside now, in the long term there can be many many developmental problems. I don't want to dwell on this but it is just hard that some of it can be possibly combated with kangaroo care but our hospital just won't do it.  Babies' brains develop in their sleep and deep sleep is best, which often happens when you Kangaroo with your baby. But alas, not at our hospital. 

So we ordered something called The Zaky. It is a hand-shaped pillow we can scent by putting behind our neck and it's supposed to make Karis feel like we are their with her. It is a little weird looking but maybe it will help. At this point Dr. Chiba said they will use it maybe twice a week and see if it helps, like a trial I guess. It took so long to get this "little" victory. I pray so many times everyday, every hour that God would be in Karis' isolette with her, comforting her. This is my biggest struggle about the care she is receiving here in Japan. I have watched how the nurses just let babies cry, maybe they are busy, maybe they are talking, maybe they just do see a baby in distress. I know Karis' cry is so tiny and she doesn't have many alarms, so I don't know how much they comfort her. All I want to do as her mom is be there when she needs me. Some days or lets face it EVERYDAY, ALL DAY LONG, all I want to do is go there, snatch her up and take her back to America so I could be by her side comforting her, cheering and praying for her. I mean that is my job as her Mom and I just can't do it here, they won't let me! It breaks my heart every time I think about it. So please pray that Karis' will feel the comfort she needs when we are not with her.

UPDATE: They just put the Zacky in yesterday so we will see how it is going.  Having an early visiting time due to Clifford's work time has let us see a few things we wouldn't get to :)  We were able to see them give Karis an X-ray and watched them put on her CPAP mask, both times she was a champ!!  Very little crying and she just got comfortable and went right back to sleep.  As her Mom it makes me feel a little better knowing that maybe she is very content baby. 

Please continue to pray for these things...

- Lungs to mature and become stronger, so she will have fewer "episodes".
- For her brain development.
- For good weight gain to continue with increased feedings.
- For her eyes to develop correctly, her eye test is next week.
- For comfort when she is in need.

In Him,
Danielle

Here are some pics and video :)

I just love her! This was the first time we saw her without anything on her face <3 br="br">

Her first little outfit, they let us put it on for our visit, but she still can't wear clothes yet.  They need to be able to see her back when she stops breathing. 
Could this face be called anything but precious!