Friday, August 14, 2009

Two Steps Forward, One Step Back

Everything is still going well, but we're running into another race against the clock.  As we have stated before, Karsie is being supplemented her food while she is not getting full feeds of breast milk. Even with the breast milk, Karsie is needing to be given something called TPN (Total Parenteral Nutrition).  It has the nutrients that she needs to survive and does not have to be digested.  However, the TPN is a necessary evil as long term use starts to hit the liver hard. Karsie had some labs done today and on her liver enzymes her bilirubin was trending higher. This is expected, but we are needing to get Karsie off of this as soon as possible.  The way to fix this is to have Karsie able to handle much higher doses of breast milk.  The more she is able to handle, the less TPN she will need to get all of her nutrients.  Right now, she is on a good pace. Her long term goal is 15 mL an hour.  She is currently at 2.5 and being increased .5 mL every day. For every mL she increases on breast milk she is reduced a mL of TPN given.  She is currently at 10 mL an hour of TPN.  At this rate she will be at 15 mL in about 3 weeks, give or take.  If there are no setbacks, there is no problem, and even if there are some setbacks, the liver can repair itself.  However, this cannot go on for a whole lot longer. She is also being given medication to help those levels.

The rest of the news is good news.  She is being "sprinted" on her nasal cannula which means she is being given the cannula 2 times a day for 2 hours to see how she handles it.  She did great today.  The video we posted earlier is during her time on the nasal cannula and you can see she is alert and happy (until the end...but she calmed down quickly after that).  We came in tonight as well and she was reduced on her CPAP to a rate of 5, which is less pressure than 6, and she was, for the first time, at room air, which is 21%.  And handling it!!!  She troopin' along. 

Her patch looks good still.  It's very close to looking like skin.  The green color is turning much lighter and looking thicker.  Now that she's not able to hit herself even though it hurts to do so (can't babies just use reasoning to stop doing that?) she doesn't go through that downward spiral making her so mad, so she's been much more pleasant lately.  

Finally, Grandma Turner was able to see her today.  We are still very sad that Children's makes us choose only 2 people to go in other than us, which essentially makes this Grandma's only visit to see Karsie until she's out of the NICU.  However, we also realize that an exception was made on our behalf, and while we do not at all agree with the rules we are all very thankful that we were given this gift.  We spent a lot of time with Karsie today, most of which she was awake for.  Grandma read her Bible stories and we held her hand and talked to her.  It was a magical time.    


  1. Praise the Lord that Grandma Dorene was able to see and touch Karsie. What a wonderful gift! We are continuing to pray for miracles everyday and for strength for Kevin and Michelle. God Bless you all and especially Karsie. Joan Simons

  2. Well, perhaps the rate of increase of her MBM will go up a bit? 1/2 ml a day is really slow, as it must need to be for now. But if she gets to where she can tolerate a larger amount, she might also go up faster. Ask the nurses/docs about that?
    And TPN isn't free of side effects, but babies can be on it for a very long time. Sometimes that's just how it has to be. So I pray she can tolerate her breast milk in ever increasing amounts!

    It's great she is tolerating some nasal cannula time and managing off CPAP here and there! Good for her! And in room air too!
    Her lungs & breathing are definitely getting so much better! It wasn't so long ago she was on an oscillator, (a very high tech way of breathing) now she is SO much better! I imagine pretty soon her breathing won't be an issue anymore, she'll do that by herself. I am celebrating her respiratory success!

    I am also glad you have good things to say about Patch....holding up, healing, and no surgery required to fix. Yea!

    Karsie is heading the right way for sure. Not without setbacks, but overall? Great stuff!

    I am happy Grandma Turner was able to see her, those are lovely photos. And Karsie is so utterly precious in the video, what a dear heart!
    She will be so happy to meet and greet all her adoring family & friends one day.
    Till then, thank you for sharing her with us all, here on the Blog.
    Much love to all, Jen.

  3. SO Happy for your mom Kevin! :) Glad she got to go in for a visit...even though just this once...I am sure Karsie enjoyed every second!
    -Sarah B

  4. in response to what you asked about baby's using reasoning to not hurt themselves...not sure if it was a rhetorical question or not, but just in case, my 2 month old still has trouble controlling his flailing limbs. he just began putting his fist to his mouth to suck on it now and then, but i think its around 3 months old when they have much better control and they don't startle so much. that's partly why babies love to be swaddled so much, their startle reflex doesn't wake them up and scare them!

  5. Michelle,

    I found your blog and wanted to let you know, if Karsie ends up staying on TPN (or even tube feeding), the Oley Foundation can be a good, free resource for you.

    We offer free information and peer support for families with a member on home tube or IV feeding. Check out our website at

    In particular I wanted to tell you about a treatment for infants/children on TPN who have liver disease -- it's called Omegaven, and it's an alternative IV lipid source for kid's TPN. Follow the link below to read more about it.

    • Omegaven -- a new treatment for liver disease in children on TPN

    You might also be interested in meeting other parents who have been there, done that. You can try these links below -- or feel free to contact me and I can make a more personal match. Especially if you are interested in meeting another parent of a child on omegaven.

    • Meet Patients Section (try all three links)

    Finally, a great resource if you go home on TPN:

    • TPN Complication Chart

    Of course I'm hoping that Karsie will never need our help --that she soon thrives on breast feedings -- but know that we are here if you need us -- and everything is free of charge.

    If you have any questions or would like to be introduced to another family, feel free to contact me.

    Warm regards,
    Roslyn Dahl
    Oley Foundation Staff Member
    (800) 776-OLEY