Wednesday, November 7, 2012

Sleeping over!!!

So sorry it has been awhile since I updated, I have been pretty busy with little miss Karis and trying to get things ready for her to come home.  I know many of you are wondering when is she coming home??  Is it getting close??  So I will start off with this (drum roll please.....) yep we still don't know!! I say that in jest, but it is getting a little old.  I guess we are learning God's ability to sutain us and give patience in a new way.  I do think we are getting close, I am hoping in the next two weeks but really they haven't given an answer.

Karis has gotten many of her test that she has needed to go home.  We haven't really heard anything in detail, I think we will have a big sit down before we get discharged.  Here is what I do know.  Karis has had an EEG (brain function) I believe every thing looked fine.  Also, she had a hearing test.  Her left ear showed some "problems" so they took her to a specialist.  They said her tubes or ear tissue are soft?!?  I am not sure what that means, but I am not teribbly worried. She had an MRI today, I walked with her and waited and then walked her back up.  I was a bit nervous about the sedative, but she was fine and waking up as we got back to the NICU.  Also, today she was seeing a doctor about her hemangioma ( we have an appointment to meet and talk today).  I am sure they will say wait and see...I have researched it a bit, there are options of different medications that sometimes work, but I am not sure we want to give her anything.  Sometimes I think I am just vain in wanting the spot to go away, I mean she is beautiful as is, but then again I don't want her to be teased or anything if it doesn't go away.  Also, I can't really explain to people here what it is, so there is that :(  Anyways  all of these test do mean we are getting close.

In big news, we got to spend the night on Saturday- Yay! Yay! Yay! I will get to that in a minute.  If you didn't know Wednesday October 31 was my due date.  I had really been thinking about how to spend the day, did I want to wallow and lay in bed and be sad.  I decided no, I have done enough of that in the last few months.  I decided since very soon Karis will be home and it will be winter and we are not supposed to take her out or be around a lot of people, so I will be stuck inside a lot. Anyways we decided to get up very early and go see the fall leaves.  It was a great time to spend with my love and remember our son.

Last week and weekend was very busy.  I had a baby shower with friends from work on Saturday.  Let me tell you it was so great. It was as cute as can be with owl theme and fall tastes!!  Pumpkin dip, spice cake..yummy, yummy!  Then we stayed with Karis at the hospital!!! So fun I just love being with her and waking up with her in the morning and at night even.  She woke up a lot because she gets tired when breastfeeding and then doesn't eat as much! Then she gets hungry.  Anyways by the 5 am wake up I was on tired Mama! She wasn't really hungry just awake that time so I woke Clifford up and they has some bonding time!  Such a great time to be with our girl and not have to leave.  And guess what we get to do it again this weekend!!!  Well overall I think we are just waiting for Karis to gain a few more grams.  She is up to 2300+ and at 2500 we will start talking discharge :)  Everytime I see Dr. Chiba I mention when can we come home.  I am sure he is sick of it but OH WELL :)  So everytime I ask he say, hmmmmm so hard to know.  But finally yesterday his answer was, hmmm maybe a week or two!!!! So YAY for us coming to the end for sure!  Well we are truly blessed and thankful for all your support and prayers and comments and gifts for little Karis.  What a joy she truly is <3 a="a" add="add" all="all" br="br" bunch="bunch" but="but" do="do" family="family" from="from" guess="guess" have="have" i="i" is="is" it="it" love="love" nbsp="nbsp" not="not" of="of" our="our" pictures="pictures" times="times" to="to" tried="tried" video="video" well="well" will="will" working...i="working...i" your="your">
Mama giving Karis a bath finally!!! She actually likes them but this one she was not a fan of:)
While trying to get a cute pic of the three of us, this is what we took! So funny, look at those cross eyes!
Well she is sleeping but cute none the less!
 



Monday, October 15, 2012

Finally Finally Finally!

Well there is such big news around here, with so many great things to tell you about!  First, Karis has finally moved to NICU Room B : D  If I could make that little smiley huge I would because that is how I feel about it! I really miss the sweet nurses in the other room, but we have to keep moving in order to get our little cutie home.  Well if you are friends with me on Facebook then you know this already, but we finally got to hold Karis.  And let me tell you it was HEAVEN and is every time I hold her.  She is so sweet and snugly and oh her sweet smell.  She makes just the cutest little sounds and moves around a little.  I just love being so close to her and kissing the top of her little head.  She is just the sweetest baby every. Now when we do Kangaroo Care they only keep a pulse ox monitor on her so I get a little crazy listening for her breathing but I this will continue for a long time.  I was talking with my sister and remembering when her girls were little and I would watch them.  When they were babies I would always go into their room every 20 min or so to check they were breathing so you know I think I will be VERY crazy about it with my sweet girl. 
  As I thought before not many Moms are doing Kangaroo Care.  There is only 1 chair and two hour time slots per day. I don't know if they don't know about it or just don't want to inconvenience the nurses.  I really don't understand, but in all honesty it means I can do it more. I feel sad for the other Moms actually.  I think in many ways they are VERY BOUND by having to act a certain way because that is the Japanese way ( this is just what I think).  I mean I can't imagine any new Mom not wanting to snuggle with their baby for an extra hour after visiting time, out of the incubator.   It is the first true privacy that I or we have had as a family in 3 months since the NICU here is just two big rooms.
  In other BIG news about Karis- she made it to 4lbs today!!!!!!Yay for 4 lbs.  We didn't see any doctors today, so our update about Karis was very quick just from the nurse.  I asked Dr. Homa this weekend if he thought they would take her out of the incubator soon.  He couldn't give me a real answer, but of course more wait and see.  Actually, I feel ok about this one.  She is still so tiny, I don't think any of the other babies are that small that are in a crib. He said they would really like to see here stop having Brady episodes, where her heart slows down and also apnea with her breathing.  On Wednesday her gestational age will be 38 weeks.  He keeps telling me that soon this will go away. with age...I don't know it just seems like something we will have to wait out for now.
Prayer Request
  • For Karis to keep gaining weight
  • For her Apnea/ Bradycardia to resolve
  • As she starts to eat bottle or breast that the transition will be smooth. ( We are going to talk about this on Wednesday with the translator present)
    I want to share something I am taking part in this month- October is Pregnancy Loss and Infant Loss Awareness Month.  I have found it very hard to not be able to grieve for Judah the way " I think" I should.  Having Karis in the NICU has forced me in many good ways, to keep moving.  But there is apart of me that wishes I could just be sad for Judah for days on end and cry and cry and cry. I often wonder if I am doing enough to remember him. It is just not fair that he is not here.  He was wanted and loved just as much as Karis, but we only had him here for such a few days.  It is hard not to have him creep into every big event we go though with Karis, I assume it will always be this way for me.  So, since this is the month of his original due date, I decided to participate in a group call Capture your Grief 2012 on Facebook, and have been posting things as they pertain to me. Well today October 15, is something called International Wave of Light Day.  At 7 pm you light a candle in memory of a lost child, and this continues all around the world.  Participating in this project has been so good for me.  It has given me an outlet to focus just on my love for Judah and my grief over his death.  I am going to make the pictures and what I wrote into a photo book.  I really liked how this will end on their original due date October 31.  On that day I want to spend it with my husband acknowledging our loss of our son.  I am writing about this because I want to make sure people know I am ok emotionally ( I think some of my facebook posts have concerned people who don't know what I am doing) I am just remembering our precious boy.

Here are some cute snuggle pictures for your enjoyment!!!
First snuggle with Mommy

Daddy snuggles are so nice!! I want to sleep on Daddy all the time!!

First Family photo outside "the box"!!!

This is the photo for Wave of Light-In memory of our babies- Judah Masaki Moore. For Carey and Jeremy Bear- In memory of Rudyard Bear, Desmond Bear, and Oscar Bear.  You will always be missed and loved.



Monday, October 8, 2012

Baby Steps

For all of you who prayed for our meeting- Thank you! We didn't really get the answer I wanted but the meeting wasn't all bad.  The short of it is this...the rule is no holding in Room A NICU and she can't be moved until a new baby comes in or she reaches 1800grams.  This has to do with insurance and how many nurses per baby are in that room.  If you know me personally then you won't be surprised that I am not certain I am getting the "whole truth" but I really can't dwell on that.  I am here in Japan and just have to go with what is being said.  There are days that I would love to be able to go completely ballistic and demand Karis be taken out ect ect... but that is not what God has called me to do.  I don't know why this trial was chosen for us, but we are here.  I am just going to try and glorify my heavenly father through it!  I could go on and on and explain more but really there is no need too. One of the best things that came out of the meeting is we will have a traslator with us every Wednesday.  I think it will be helpful for when we have "baby training" as I like to call it.  Dr. Chiba insisted it would be awhile until we could take Karis home because I needed to learn how to take care of her...umm ok?!?!? Well you know he is not confident I know how to change diapers and give her a bath....(really are you serious???) Breastfeeding ok yes I think this might be a challenge but praying it won't, but everything else...he was really serious too! Let's just say my silence was an act of God. Ok moving on from the meeting.  Karis' two main nurses were so funny that day when I went back in the afternoon!  Nurse Miyuki was in the meeting, and talked with us about Kangaroo Care. She is very sweet but knows little English, so it is a bit like charades communicating with her and then Yuko, who is such a blessing.  Well I needed to pump and usually they stick me in a corner in the other room behind some screens. Anyways, that day they said"Oh no one is near your incubator today, they have all been moved, so you can do it bedside with screens :) This made for one happy Mama! I hate the 20 min or so I lose if I have to pump.  So as they were setting up, Miyuki said, Quick now is your chance!!  No one will see you take her out and get a little hold in :)  Now, I am pretty sure they were joking, but they are so sweet to try and lighten the mood.  These two went on and on about how they just wanted to hold Karis :) I think it will be a happy day for everyone, when the time comes.    Speaking of Yuko, she really has been a blessing to me.  She is close to my age and just got married.  Her English is amazing and it really helps to be able to talk to at least one person who understands.  She even asked about putting Karis in clothes again, I didn't even ask her to, and the answer was YES!! At least while she is in NICU A room.  So happy me, the clothes my Mom brought won't go to waste and I ordered a few cute ones.  Also, the nurses love to dress her.  They make sure to take a picture of each outfit and keep it in her scrapbook. I was told even Dr. Homa was into it and picked out the cute poka dot one with her name on it!    In other news, I was blessed by a virtual baby shower.  Some of my very sweet friends and calvary friends had a party for Karis and I joined in with my morning coffee in hand.  It was so great to talk with these ladies who have prayed for us through everything.  Thank you for supporting and blessing us in this way. It was fun to celebrate my sweet girl.   Well, how is Karis you ask?  She is doing so well.  She is off her feeding pump and doing great with feeding.  Her edema seems to be better and for the past four days I have heard her alarm only go off once. I think some main things to still pray for are-
  • Her need to gain weight.  The doctors keep telling me it is fine, but if I compare other preemie babies at this stage she seems very small still and only gaining slowly. 
  • Eyes- continue to pray for her ROP test.  Her eye development is of course ongoing. We pray that her eyes will just continue to remain the same or even improve!
  • Upcoming- please pray for the time she will start to take a bottle or breastfeed.  Many micro preemies can develop an aversion to eating.  Please cover this in prayer as it is a very BIG thing that can impact her for a long time.  
  • Edema- she has had some problems with this, and they have taken her off the meds for it a few times, but she hasn't done well with out the medicine so please pray her kidneys would start working and keeping her water retention down. 
Here is  video I made for the virtual shower, it shows how far Karis has come in 12 weeks! What a miracle and testament to God's power and Grace <3 br="br">
video

Wednesday, October 3, 2012

Meeting

Just a quick note, it is day 82 and I have yet to hold Karis.  She is off all oxygen, but still in an incubator.  She has passed 1500 grams, and is now 35 weeks.  All of these things are what I have been told needed to happen for when I could hold her.  Well still the big NO.  Today, I am going with a translator to talk about why?  In some ways I feel like our doctor is being a big Jerk.  Mostly because we don't bow down to him, and I did my research about what to expect. Our translator talked with him on the phone and basically it is a "rule" no holding in the level A NICU.  Well that is not exactly true because there are a few parents who have held their babies.  But I think this is mostly because those babies are in the NICU long term.  Anyways please pray for me in the next 2 1/2 hours is the meeting.  If there really is a medically reason, then of course I don't want to do anything to harm Karis, but if it is just a "rule" then....   They told our translator that Karis will be the next baby moved to the B room when a new case comes in and then I can hold her.  Well I know the have the room and A room is getting crowded so I am just going to ask the they move her now.  The doctor said when the next emergency baby comes in then they will move Karis.  Of course I can not pray that any baby ends up in the NICU so please pray with me that they will just say ok we will move her.  On Monday she was very fussy, and nothing I did really seemed to help.  In my heart I knew all she wanted was for me to pick her up and cuddle her....I think it is time.  Please pray with us that God would intervene!!!  As for Karis her health is great, she is eating like a champ but she has a little edema (water retention) the have taken her off the drug they give her twice with no luck!  Let's pray that she will be able to come off of it soon!  Thank you for all your prayers.  On a side note I am doing something this month to remember Judah.  It is called Capture your Grief 2012- everyday I will post something different to remember Judah by.  I can't think of anything more fitting for this month.  My due date was Oct 31 so I think this will and already has helped me with my Grief.  http://carlymarieprojectheal.com/2012/09/capture-your-grief-this-october-2012-for-pregnancy-infant-loss-awareness-month.htmlI will be posting most of it to facebook and then making a memory book later to keep. Here is a cute picture of our little fighter.
This is a close as I get to holding her.  I jam my arm and hand all the way through and sit very close to her incubator with my face right next to hers....oh the joy I will feel with her in my arms! Someday

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!

Thursday, August 23, 2012

Oh Great God

Oh great God, give us rest
We're all worn thin from all of this
At the end of our hope, with nothing left
Oh great God, give us rest

Oh great God, do your best
Have You seen this place, it's all a mess
And I've done my part too well I guess
Oh great God, do your best

Could You take a song and make it Thine?
From a crooked heart twisted up like mine
Would You open up Heaven's glory light?
Shine on in and give these dead bones life...

This song has played through my mind over and over again the past few days.  Things have been difficult the past few days. I have been to the point of not being able to do anything but have that song go through my head.  I have been mad a the world, at God at EVERYTHING. I haven't been able to pray, read the bible or even listen to music without crying.  I am mad that I have to walk into the NICU everyday and mad that my sweet girl is there, mad that I have to leave when I don't want to, mad that I have to pump instead of breastfeed, and mad when I see other people holding their preemie child.  In some ways I am mad God has sent us here to Japan, and we are in a NICU where basically I can't hold my little girl until she is off oxygen. Even though they know that kangaroo care (skin to skin contact) is very benificial for both babies and mothers. According to our doctor there just isn't enough room in the tiny NICU to do it.  And while I see their point at least about the size of our area of the NICU, I am mad!!! As a mother I just long to hold my baby, I have dreamed and thought of that day and Karis is 40 days old and I still haven't held her. Of course I am very thankful for all the ways my child has been helped and I know she is alive due to all that the NICU has done to help her, but I am mad/sad.  I feel what that song says...Oh God give us rest, have you seen this place? It's a mess! I AM A MESS!  Sometimes I truly wonder at the things that go though my mind.  But what I have to come back to is God is here with me in this mess. I know that God is called the God of comfort, and I have felt this comfort so many times when I have turned to Him in my pain.  So I am praying that he will be there to comfort Karis as she needs since I can't. I am praying that he will hold her tight when I can't.  That she will feel loved because frankly I think 40 days is to long for any stable baby ( this is how the doctors have described her over and over again), to not be held by her mother. Clifford talked about it again today with Dr. Chiba, the answer is still no, so all we can do is pray they will change their mind of that she we do really well and holding will happen sooner than expected.

On to Karis :)

CPAP- As you know she was put on CPAP. What is it you might wonder??  CPAP is- Continuous positive airway pressure. In premature babies, CPAP is delivered through a set of nasal prongs or through a small mask that fits snugly over a baby’s nose. CPAP is used to deliver constant air pressure into a baby’s nose, which helps the air sacs in the lungs stay open and helps prevent apnea.  So, Karis was put on CPAP on Monday and is doing fantastic.  I think she may even be surprising the doctors.  She stays mostly at 21% oxygen, which is what we breath in room air.  That is the lowest setting that their is, so that is fantastic too.  The only time they usually need to up the oxygen is during feedings, this is very common. But they can usually decrease it again quickly and she will remain stable. Also, today on day 3 of CPAP they are already starting to put her on room air with monitors to see how she does.  She spent 4 hours breathing on her own and only had one episode of low heart rate (the nurse told me).  They kept the mask off so we could see her tube free for the first time today!!  I was so excited, oh how I love her sweet face. Please pray with us that she continues to improve in this area with no major setbacks. 

Weight- She has not gained much weight she is up to 1.84lbs so still under 2lbs.  The doctors have said they would like her to be gaining more, but aren't to concerned yet.  She is eating 9.5 cc of milk per feeding 12 times per day. So that is about 114 mil. or 3.85 oz a day.  Not a full bottle per day yet.

Something that is upcoming. ROP- Retinopathy of prematurity,  is a disease that affects the retina of the eye. ROP affects the blood vessels on the retina in a preemie's eyes, and is one of the leading causes of childhood blindness. In the next two weeks she will be tested to see what level she is at. ROP is classified according to different stages. Higher stages of ROP are more severe, and more likely to cause blindness or long-term vision problems. Lower stages of ROP are less severe; most children with stage I and II ROP will improve without treatment and will have normal vision. Please start to pray with us over her eyes.  We know the Lord can and will work on our behalf! 

I know many of you are teacher friends and many of you are Mama's and a new school year has started!  I hope everyone has a great school year.  I am not gonna lie, I miss teaching, but I know when sweet pumpkin face is home that will just be a fond memory! Here are some pics and a video (the cutest video in the whole wide world- at least I think so!).

She LOVES to hold on to something while sleeping. First it was the tube in her mouth now this tube!

Big beautiful eyes!
A new view, all snuggled up inside my incubator.
video




Sunday, August 19, 2012

Movin' On Up...

 To the CPAP...
       I don't remember what it stands for, but yes, Karis has been growing slowly but steadily over these last 5 weeks, and the doctors have been weening her from the ventilator each day, as her lungs get stronger.  Her first machine did all of the breathing for her.  Then we changed to the current ventilator (I wanna say it's IMV or something, the name brand of the machine is Bear Cub--so you NICU experts may know the kind of venilator)...

    Anyways, during the weening process I've seen her assisted breaths/per minute decrease from 45 down to 20 today.  Let me briefly explain, the current ventilator is made to "read" her breathing patterns and synchronize with her so as to assist her in taking her own breaths.  Its role is to "help" her.  Now call me the nerd because I actually began to understand how to read the different dials on the machine and understand what some of them meant.  One number indicated the number of breaths the machine was set to assist her with--this number was controlled by the doc, while another number on the ventilator indicated the number of breaths she was actually taking (which changed every second).  So let's say that the machine was set at 45 breaths/per minute.  If the second number is 45, then the machine is essentially helping her with every breath...

    However, if it was set at 45, and her actual breaths were at anything above that, anything above that she was doing on her own.  I've seen the set number dialed back each day, but Karis has been taking many of her own breaths without assistance from the machine.  Each day, the doctor dials back how much the machine will assist, and each day thus far Karis has been doing well.  The doctors plan on changing her over from the ventilator to a nasal CPAP tomorrow.  Basically, she'll no longer have the breathing tube in her mouth, and the feeding tube through her nose.  She'll now get milk through her mouth.  Please pray that will happen smoothly without problems.
   
     She's also been sleeping a lot lately, and playing during the night (the nurses say--we may have a night owl on our hands).  Her weight has also gone beyond 800 grams (though they haven't measured in the last 2 days so we don't quite know).  They've increased her milk volume to 8.5cc of milk with each feeding. 

     We went to visit Karis yesterday early so that we could make it back in time for our friends' wedding ceremony.  Long story short, one broke down, towed car, 2 taxi rides,  one subway ride later, and a car ride later, we arrived 30 minuted before the reception festivities were over.  Please pray that our car will be fixed relatively cheaply.    

    Our time in the Japanese NICU has been quite objective driven.  Slowly, but surely, we've gotten to get our doctors to understand us, but there are still a few things that frankly are quite  "difficult" to understand, much less accept.  Though we cannot be there 24/7, we have fought to be there 7 days a week.  We'd also like to use a Zaky to help her development, and have talked with Dr. Chiba.  He seemed (anyway) to at least be open to it.  We're hoping we can order one and use it to aid in Karis' development.  Moreover, there is a rule that babies in the NICU are not normally allowed clothes to wear--one reason that we've learned is that Japanese don't usually put their babies in full on clothes, but rather pajama-type clothing.

     Okay, we live in Japan, and Japanese are different, but so many friends bought us preemie clothes and we'd like to use them.  The OTHER reason, which has been gently explained by our great nurse--and she is great (but nevertheless the notion is preposterous in this case) is that if we bring clothes to the NICU it will cause other NICU parents to lose face---in other words, it wouldn't be fair.   I recognize this as a cultural value and it's warranted in some situations...but frankly, the fact that all of these babies are in the NICU calls the very notion of fairness into question.  Sometimes life isn't fair. We do not intend to "embarrass" other parents and make them lose face; however, wanting to give our daughter our best, and fight for allowing other parents to have the option to do the same is  not a bad thing--and preemie clothes do exist and are sold in Japan--so not every NICU has this practice.  
 
     Honestly, if parents are going to get into a contest of "keeping up with the Jones'" I doubt the NICU is the place for this to happen.  Kindergarten, sure.  Childhood development and pace..yup.  Elementary school to college and beyond, yes.  After school activities...sure.  But in a NICU?!  I doubt it.  (I could be wrong though).   RANT finished.

     Our number one desire is to be able to hold Karis, which we haven't been able to do yet, even though she's 5 weeks old. We've read and seen that doing so is a very healthy thing in her development...not to mention, as parents, we'd just like to be able to hold our baby.  To not be allowed to do so yet, is not an easy thing for us to do.  So, please pray that we have favor to be able to that.  Thanks everyone.

Here are some pictures and a recent video :)
Sweet face, soon that tube will be gone!!
A necklace a lovely friend of mine sent to me! Thank you Angela
Look Aiden and Mason, we read the book you sent us <3 br="br">
video


         Clifford & Danielle

Saturday, August 11, 2012

One Month Old


So today marks one month since our princess was born.  But it again marks one month since our son died. Not gonna lie it was a hard day for me with the same set of two opposing emotions. Sad and crying for many parts of the day, and then happy and mostly joyful as we visited with Karis. I wonder what people think of me when they look at me.  Can they tell I am a Mom of a 1 month old, probably not. Do I feel like a Mom of a 1 month old, not really. The only thing that lets me know I have a baby who needs me, the only thing that reminds me throughout the day is the pumping. Also, can they tell I miss my baby Judah, nope probably not. Sometimes I wonder who in the NICU knows our story, and what do they think. There are only a few people I can talk to without the help of my husband, sometimes all of this just makes me sad!!! Then when I get to the NICU and see my sweet girl, I am in LOVE. Oh how long I have waited to be a Mom. I have watched so many friends and all their sweet children and always dreamed of the day it would be my turn. Never thinking I would have a different kind of path to walk.  I may never know why all of this has happened to us, I don't think there is an "answer" to that question. But I do know that we will both keep looking to God as our strength and help during this time.  To say that I am happy my baby girl is one month old would be an UNDER STATEMENT. I know she is an amazing miracle and am so thankful God gave her to us.
So on to an update about Karis
She has responded very well to the transfusion, so much that the doctors started to ween her the very next morning. When we went in on Friday the peek setting on her vent went from 16 to 15 and today it was at 14. Which is great that they are finally doing this, but it was a little bit rough today. During the 2 hours we are able to be in the NICU her alarms went off more than I can every remember. And her main vent alarm went of so many times. I can only remember this happening a few times since she has been on this particular machine. So, needless to say while we were so happy she is now one month old, today was a little stressful. Please pray, pray, pray that she will continue to improve even with the lower settings. I know this is what needs to happen but as her Mom it is hard to watch. She doesn't cry since she is on a vent, but she scrunches her little face and you just know she is hurting, it makes me so sad for her. Please pray that we will have another miracle, a quick transition with no problems. Here is a picture of the princess today!!
We are so thankful for you baby girl!

Danielle

Thursday, August 9, 2012

Many Blessings

So my mother and step father were here for two weeks and it was so good to have them.  Sometimes you just need family around and this was one of those times, but it also made my updating more difficult. Also, they brought many gifts for me ( yay for my Medela pump, and sweet things people bought for Karis) Thank you so much if you were one of the many people who gave money towards these things or sent a gift. Your kindness with cards of congratulations and sympathy are cherished.  Well it is amazing to think that in just one day my sweet girl will be one month old. With this my heart also longs to see my sweet boy Judah, who would have been a month old.  I guess this will never go away. I know many of you check here to find how Karis is doing, but I feel the need to say that my heart is still broken everyday at the loss of our son Judah.  I look at Karis everyday and am so thankful for her, but also long that her brother was here with her.

I think we are finding a grove with going to the hospital, but at night I always wish I was there.  I have also been very tired, I think recovering from my 100+ days of bed rest, but trying to push myself little by little.  Plus, there is the pumping schedule, which all seems so unnatural to me with out a baby here, but I know that it is what I have to do to provide what is best for Karis.  Maybe all of these things seem randomly strung together but to be honest I am still in a place where one minute I am laughing at something and the next I am crying.  I assume this is just how it will be for now.  On a side note, I have been thinking how our life has changed in AMAZING and sometimes gut wrenching ways in one short year.  About this time last year, my now sweet husband and I had just had our first "big talk" about our feelings for each other. HA! What a year can bring. I never dreamed "this" would be our life ever much less in one year, but I guess who would.  But I am thankful everyday for such a wonderful man to walk through life with!

So what has been happening with Karis??? Well, we have so many things to praise God for.  She is infection free and has been off of any kind of antibiotics for awhile. Also, I brain bleed has resolved. She is gaining weight and is up to 793 grams which is about 1.7lbs. Also, she is eating 7.5 mil of per feeding.  Also, has had no intestinal issues which can happen with babies so small.  Another praise is she is very strong, when she is not all tucked under tight in her bed and on her stomach, she LOVES to kick her feet and often lifts her body up with her feet.  It is really amazing to see and sometimes scary for me since it seems like she could turn over but is still attached to he vent and such.  I love my little fighter!!!  While she is doing well and her overall condition is stable, there are still many things to pray for. One thing is her PDA which if you remember has to do with a little valve in her heart. It will be open one day and then closing the next.  This is very common that it doesn't completlely resolve and her PDA may continue to go back a forth.  But it is currently affecting her breathing and making it more difficult, also the meds they have her on to correct it give her edema (water weight). So please pray for this to be healed. Also, she had her first blood transfusion yesterday for anemea.  Please pray that she responds well to this treatment and that one time is all she will need to correct the anemea.
Side note- my mother has been very sick since getting back home.  She can't keep anything in her stomach! Please pray for a quick recovery.

Sometimes things are so difficult but we know the Lord is with us!!

Psalm 91
Whoever dwells in the shelter of the Most High
    will rest in the shadow of the Almighty.[a]
I will say of the Lord, “He is my refuge and my fortress,
    my God, in whom I trust.”

Here are some pictures...

I LOVE my very own Soft Bear. My cousin Sarah used her own money to buy it. I love you Sarah!!
My first story book. Mommy says thank you to ALL the friends who sent books over to read. As a teacher and lover of children's books this makes my heart happy :)
Yes I am that tiny! Someday I will have my own ring and it will only fit my finger.
Mimi and Poppy praying for me. I LOVE and miss you <3 <3 But will come to visit as soon as I can- Love Karis
Mimi and Poppy got to enjoy some Japanese festival.
My first Japanese story-Why Do Elephants have long noses?  It is really by Kipling but in my Japanese story book :) 
Mommy & Daddy at Tanabata- next year we will bring you Karis!



 Blessings to You all!
Clifford & Danielle

Sunday, July 29, 2012

It's Hot Outside...

 It really is hot, and the AC in our car is broken--which really stinks.  Just a quick update on Karis:

        Her PDA opened up again, a few days ago and they've given her some medicine to help it close.  Hopefully it will shut completely as she grows older.   Her volume of milk intake hasn't increased for the last 4 days, but the NICU staff are aiming at 60cc of milk per feeding.  Right now, she is at 6.5cc.

      Her brain bleed hasn't resolved but the docs are fairly confident that it will. (It's not a serious brain bleed).  Her body weight had increased to about 623g a few days ago.  But unlike a NICU in America, the doctors were pretty much gone for the weekend, with the nurses left to take care of the babies (I'm quite sure many of these nurses are MORE than capable--but usually the doctors are the ones who can explain everything that's going on).  Pray that her milk intake will increase along with her body weight.

    The doctor told me a few days ago that if she's doing well enough, they hope to take her off the current ventilator and change her to a nasal CPAP before day 28.  Today is day 16.

  As our faithful readers know,  Danielle's parents are here and its been a good visit thus far.  They've only gotten to see Karis once, and Dr. C (the neonatologist - previously known as "doom and gloom", not so doom and gloom now) has said they can only visit a total of 2 times.  Please pray that we have favor and they can visit Karis MOORE :).   Thanks for all of your prayers and support.

               Sincerely,

               Clifford & Danielle

Karis' first storybook

Thursday, July 26, 2012

Mimi &Poppy

So my parents made it- Yay! Also, through prayer I am sure, the nurse just happened to ask at the end of visiting hours- Oh are your parents resting at home today? No, I said, they are out in the waiting room.  She was so suprised and then went to ask the doctor if they could meet Karis.  The answer was YES :).  So they got to meet her yesterday.  Now the doctor said this will not change the amount of times they can see her, but we can pray for that too!  Overall she is doing well and still stable.  Clifford and Dr. Chiba had a very long conversation about his plan on getting her to the next step in breathing which is a CPAP.  I will write more on this later.  A praise is that they changed her ventilator.  The first one she was on, just automatically did all the work for her as far as taking breathes and how many times.  But when we came in Monday she was on a new one.  This machine actually allows her to take the breaths and only assist as need (if I understood every thing the doctor explained)- so praise God!!!!  Please pray that the infection Karis is still fighting would be healed.  He WBC is still high.  Thank you for all your prayers.  Here are some pics and a video :)
video



Saturday, July 21, 2012

Sweet Baby feet!

I finally opened my lovely eyes for Mommy to see :) I could not be more in love with her. Dear God please help her little body to grow strong!
So we are finally home from the hospital. It was really nice to sleep in my bed.  Clifford had to work yesterday until around 10 pm. I want to say thanks to my sweet girlfriends who sat with me all day even as I slept,  I know with out them around I wouldn't have had just a few break downs but rather I am sure a complete mental breakdown if I was alone.  Girls as you read this, I thank you from the bottom of my heart.  I know it was probably hard and there are no words that you can really say, but thanks for sitting here all day with me. Your friendship is truly a blessing more than you know. Also, pray for my sweet husband. At this point I can tell he is completely exhausted.  He will have a few days of break, but has a presentation he is giving this weekend he needs to work on.  Please pray for his strength and that he wouldn't get sick.

As you can imagine, the last few days have been hard.  It was much easier for me while at the hospital.  I think mostly because I knew I was at least near Karis.  My heart of course is heavy that I only get to see her for two hours a day.  Sometimes, if I am being honest, I hate all the rules in Japan.  In America I could see her almost anytime.  I am on some different pProm and NICU web sites and the moms are always writing about sitting with their babies for hours.  Nope not here. They get to do Kangaroo care, skin to skin time, even when babies are on vents (it is proven to help calm the baby) Nope not here until around 35 weeks. Family can come in and see the baby, nope not here.  Looks like my Mom will see her twice as a special favor since they are flying from America.  For some families they have homes they can stay at that are close, nope not here.  I live about 1 hour away. Also, on Tuesday I don't even get to see her at all the NICU is closed to parents who are not in the hospital.  All of this just makes me mad.  If I think about it to much, it will swallow me whole.  So, I try not to, but sometimes that is hard. In the past three years I have had to adapt to many "differences" about living in this culture. Truthfully it hasn't been to hard.  I try hard most of the time to conform to the Japanese way.  In the classes I took before coming here, something I learned was when living in a new culture it is important to" become like and remain like" that culture.  And while that will probably never really happen, I can at least try to do this by following cultural norms and "rules". But I am just finding that really hard to accept in this instance.  Please pray for my heart that it doesn't become angry towards all the differences here. Obviously where I am at in this moment today is not the best mentally.  I guess the only thing I can do is the same thing I have been doing for months.  Prayer!  Sometimes it truly isn't easy, I really just don't have any words, but I know the Holy Spirit is going before the throne on my behalf.

While I am having a hard time in that area right now, I know the doctors and nurses are competent here and doing their best.  Dr. Chiba has been very positive about how Karis is doing, and tries his best to explain everything in English.  Even when we bring a translator he still will speak in English. After telling us about her lungs looking white Clifford and I didn't really understand everything, so the next day they spent a LONG time explaining it to us again.  So how is Karis doing many of you may be wondering. Here is what is going on with her.

 -Dr. C said he considers her stable.  She has passed the 1 week mark which is great.  Next goal is 1 month.
- Brain bleed- they found a second tiny brain bleed so she has one on both sides :(  He said if they don't resolve they will turn into cysts.  Since they are both level 1 he is not very concerned and has assured us it is so common.Our prayers are that her brain would heal itself and this worry would be gone!
-PDA- tiny valve between heart and lungs.  It can open and close for awhile but for the past two days it has remained closed!!!
-Lungs- according to the second x-ray there has been some improvement.  But still she needs prayer for this as there is still white or wetness in her lungs. Pray Pray Pray for this please.
-Infection- Praise the lord her white blood cell went down to almost normal levels.  Her CRP (inflammation) level is still high but that is also common.
Breathing- she is doing well with her oxygen level and CO2 output. Praise God!


* Special prayer for my parents- My Mom and Greg are flying here in a few days to spend three weeks with us.  Please pray for them as they prepare to come.  It has been crazy for them both, but pray specifically for health that neither of them will become sick...I wouldn't take the chance of being around them if they become sick from all the plane germs :( Also, for my Mom's back it is acting up and I know how that can be on such a long flight.

So that is everything medically speaking. Non- medically speaking, when we saw here in the morning she was very active. Moving all around and stretching her sweet little limbs.  Oh how I love her so much.  I can't wait for the day I can hold her.  When we see her in the afternoon she is usually so sleepy, that we just watch her and sing to her.  But yesterday, guess what she finally opened both eyes for me BIG and WIDE(see top picture) Oh heaven, I am in love with this child <3. So here are some pictures we took of her yesterday.  I think you can truly see how tiny she really is from these pictures. 
Family picture, we love you baby girl!

Sweet little foot so tiny and precious!



 
Tiny little hand, how I love you!






Thursday, July 19, 2012

Because He Lives...

What can be said? When we woke up this morning, neither of us was happy. Today was the day we had to go take our son to the only cremation center in the city to get cremated. The hospital gave us his body for the last time, and a team of doctors were there to wave us off. We drove about an hour away to the center. My understanding is that in America, all or these details are taken care of you. NOT so here. So with my wife holding my son in the front seat,we just drove. Thankfully, when we arrived at the cremation center, we were greeted by our close friends and church family on this side of the ocean.

Our pastor held a brief service and we took Judah to the cremation room. It was very hard, and I am thankful for the handful of friends who were there for support. It's been a rough day. But--there is a HOPE that one day, we will see our son again. God is faithful who has promised that the suffering of is present time is not worthy of being compared to the glory which shall be revealed. And so we have hope--Exceeding Hope this is the reason we gave him his Japanese middle name.

As for little baby Karis--we drove back to make it just in time for NICU visiting hours. We learned that since yesterday, Karis has been turned over to lie on her stomach to help with milk digestion. We also learned that they took a chest x-ray last night and found it to be white on the x-ray. And today when they x-rayed her again, the amount of white in her chest had increased. I do not know what exactly this means, but it's not a good thing. They also adjusted the amount of breaths she'll take per minute from 40-50. We do not know what this all means, but it's a matter for prayer. Pray that her lungs would be rid of the CO2 buildup and that she can breathe well. Danielle and I are doing okay considering this day. God continues to be our strength. Thanks for your prayers, everyone.