The Long Road

Well it has been awhile since I have written anything about Karis. What has been going on in the past three months you ask? Everything baby :) In a quick run down- November/December

we finally made it home after 4 very long months in the NICU, also Mimi (my Mom) came to visit again for 3 weeks :) there were many, many snuggles and lots of kisses and hugs. I am not sure Karis was ever put down during the time my Mom was here! Right as my Mom left Clifford's work picked up and he was working a ton until the day after Christmas. This ment I was on my own with no help even from Clifford. It was very exhausting to function on such little sleep, but I made it! Then we had a glorious winter vacation where we stayed at home and figured out the new "us"! So January was the start of real life, no mom, no hubby and no vacation. Since we need to be careful about what germs Karis is exposed to means I have had to limit what we do, but I am trying to find a balance with this. Many families in our situation lock themselves away all winter until the germfest has passed. While I haven't completely done that I do try to be careful. We still haven't taken Karis to church yet, I guess it seems like so many people in such a small area, and in some ways I feel less in control with my lack of Japanese. With our American friends I can be very direct and ask if they or anyone in their family has been sick in the past week, but it seems like a challenge to me at our Japanese church. I so desperately want to bring her, as they have been so gracious and helpful to us, I guess when the time is right I will feel ok about it.

Over the past three months, I have also been reflecting about all that has happened and how I have been changed forever. Sadly, the excitement and wonder of pregnancy, child birth and even now care of Karis have been tainted. Now, when I have friends who are pregnant I am ALWAYS worried for them. Even if I don't say it and seem normal about pregnancy, that isn't how I truly feel or think. Someone said to me recently-Wow you really are doing great not being too extreme and over protective with Karis. You seem to be taking it in stride. Well it may seem that way but somedays I go absolutely CRAZY in my head and heart about her getting sick- Flu, RSV, and now some other things I will get to later. Honestly everyday and I mean EVERDAY I have at least one or more thoughts about her dying. For me, it is like the big elephant in the room, something I don't talk much about but it is there. Always wondering is today the day something will happen. It seems to happen a lot at night and when I am driving alone with her. I guess since I am not focusing on her at those times. I think some of it is Post traumatic stress from having so many things go wrong and Judah's death. To those of you who pray for us- Please pray for me that I will continue to rely on praying, it is a daily sometimes more recently hourly thing for me. Also we are wanting to come to America for a visit. The plan was to come at the end of March, but now I am concerned about plane germs and flu or RSV so I just don't know!

Now for a Karis update-
Well first of all she is just the sweetest little baby around and her Papa and I are just over the moon about her.
* She has been gaining weight ever so slowly. She is finally getting close to 9 pounds at 6 months/3 adjusted! She is my little bitty pumpkin pie<3 .She smiles up a storm and is even starting to giggle just a little. Also, she will coo if it is quiet and especially at some of her favorite toys.
*Also, in the past week she has started to swat and try (just a little) to hold stuff.
*The only developmental task for her adjusted age she is having trouble with is lifting her head/pushing up on her arms while doing tummy time. I am really not terribly concerned about this and am certain that she will get there in time!!!

So, in the past few weeks I had been noticing an increase of spitting up (not a ton) after EVERY bottle and coughing during bottles, coughing just randomly and even having times of extreme pain. Now, if you could spend any amount of time with Karis she is just a really happy baby( I am a thankful mama) Since she came home her bed has always been elevated at an angle since it was that way in the NICU. I had read about preemies having an increase chance for reflux/GERD. Then, last week i was feeding her and she started choking, while she didn't turn blue, but it scared me enough that I almost took her to the hospital. It took her about 5-10 min to start breathing again normally. I thought she may have aspirated some milk into her lungs. She seemed fine by the time we talked with her doctor. After researching a bit, I found that it seemed like she may have Silent Reflux. I actually thought this for a long time but her symptoms weren't enough at the time. So we decided to do a 24 hour PH study of what the acid was doing in her stomach, and if it was going up into her esophagus. When they test for this, a baby that has acid in their esophagus for 4% of the time is considered to have reflux. Well what they found was Karis had it 60% of the time and most of that being while she sleeps. On top of that her coughing/choking is very worrisome to her doctors. They are afraid she will choke in her sleep and die, that is basically what the doctor told me, very plainly I must say. If he was trying to scare me-well done! Now you can understand why I have been having such a hard time recently. When I went into the meeting, what I was prepared for was- yep, she has reflux and these meds should help. What I got was- yes she has EXTREME reflux and needs either surgery or an NG tube(feeding tube that goes through her nose) the doctors don't believe the meds will fix her problem. They said 90% do out grow reflux and 10% of children with reflux do not outgrow it. They believe she will be in the 10%. One of the doctors told us later he had never seen a baby with 60% reflux. So, this is where we are at, having to decide what to do...to be honest I don't really like any of the options they are giving us. We are having another meeting with them on Wednesday, and Clifford will be there along with our regular interpreter so I am hoping to get more information then. In the last meeting I was alone and with an interpreter that doesn't usually do doctors meeting, so while she did her best, there was A LOT of talking that was not givin to me word for word. We have been doing research and still just don't know...So my praying friends please pray for wisdom as we decide what is best for Karis. All I can say is being a parent is HARD. Alright enough with all the "talk" here are some pictures of this sweetie!

I Love my Papa!

Such a sweet face.

Sweet tutu girl!

I have a lot to say.

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!

 

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.

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">

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

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!

 

I think someone is very hungry in this video :)

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!