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


  1. I can see you sitting across from me at the kitchen table explaining everything while I am praying as you speak. Today is the same, praying as I read of your darling daughter. She is a trooper! CPAP machines are amazing and she is going to be as strong as her Mommy! Love you and always praying for Karis, Mommy and Daddy!

  2. Miracle. That is all I can think of. I love her, you and Clifford. I love the book.. and I just can't wait to see her running and playing and sharing how she has overcome so much. God is Good all the time!

  3. Precious! How sweet when she opens her eyes as you sing...will they allow you to use an ipod to play music for her? Praying for you all!

  4. Just a thought. I remember the NICU drama when the twins were born. For some reason, NICU nurses seem to believe they have to protect the babies from ignorant parents(in their eyes). Camille and I had THE HARDEST time getting the nurses to allow us to hold the babies. They were mean to us and mean to our pastor. They treated us so poorly that I went to the head of the NICU department to complain. So, point is, American NICU nurses can be a pain in the butt no matter where they are. Maybe for different reasons than in Japan but pains in the behind nevertheless.

  5. I am so pleased that Karis is getting on CPAP (continuous positive airway pressure), that is a big step for a little princess. Praying her oxygen requirement is low as well. Praying for under 40%. Better yet, 21% (room air that we breathe).
    You are doing great. Don't know if they have told you but if you put a picture of your precious one in front of you when you pump and play music that reminds you of her, it will help you with milk production and make the process seem a little more "normal". Also if you are allowed to put music into her isolette, for them to pay after care is given, then she will get the cue that it is time to sleep and you will have some help when you get her home, so when you play that music she will know it is time to sleep. It should be played softly, and not continuously, but it is a great calming factor for them.
    You may look at the CPAP as an awful torture for her, it usually looks awful, but it is really better for her.
    I have noticed they are using the better tape products for her skin and think I saw them using duoderm for protection too, those are all great.
    Keep up the good work, and lean on God's grace, peace and love to get you thru the dark times. The loss of a baby is a lifelong loss, and although it may become less intense, it will be there. He was part of you two. All that is normal, and you are right to let it come out too. Don't try to squelch that pain, it is real, and it is what a mother and father feel.
    Love you both, and my best to your beautiful baby girl. She is doing great.
    In Christ's love,