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.

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">

         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!


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