Thursday, July 23, 2009

NICU Meeting

This morning Michelle, Kevin, and Nana went to the hospital and found the surgeon within the vicinity.  We were able to get a quick meeting with him and someone from the NICU that had an idea of what Karsie's situation entailed.  We will probably have these about once a week, though since all three of us are constantly asking questions, we think much of it will be old news. However, today's was not.

Update from Surgeon:  Dr. Losasso started by saying there is good news and bad news.  The good news is that she is responding well to treatment.  She is being weaned off of the ventilator at a decent rate. Following that, her bowels are doing a little better.  We are close to being able to check that off of the prayer list as "answered".  The bad news (which we found out we already knew...relief) was that her abdominal cavity is so teeny tiny and her organs are not.  Organs growing inside the abdomen both keep the organs smaller and stretch out the cavity.  Because there was no restriction, her organs grew bigger than her cavity and her cavity didn't grow, so it's a double whammy.  All of which to say, he doesn't think he will be able to get everything in.  Normally, they want to start putting it all back in immediately and have it all in within 7-10 days.  We are on day 6, so the clock is ticking.

What this means:  The surgeons will start on Saturday, when they can, squeezing (like a tube of toothpaste) the intestines slowly back into the cavity.  This will help the liver, currently vertical, sit more horizontal on top of the bowel, which is where it should be.  The more "stuff" that goes in, the harder time Karsie will have breathing.  Since she has been without restriction on her lungs so far, she has had no obstacles to her breathing.  After Saturday, that changes. This "squeezing" procedure will go on a daily basis until they have to "bite the bullet" and just finish.  Meaning until it is not safe anymore for the organs to be in the siloh.  Once that is finished, assuming some miracle doesn't happen and they are able to close her up, they will get a Gore-Tex patch and sew it around the opening, over the exposed liver, and wait for the skin to grow around it.  This will most likely take at least a couple of years to complete.  Fortunately, we will be able to take her home well before that growing process is complete.  I'm sure you can pick out the parts in that situation to pray for.  

NICU - As far as Karsie is doing as a whole, the nurse practitioner explained their timeline to us.  First of all, they will work with the surgeon explaining to them how the baby is responding to treatment and how or if she is ready for more "squeezing" to be done.  Their biggest goal at this point is weaning.  Karsie needs to be getting adequate oxygen (which she seems to be doing very nicely), she needs to be stabilizing her blood pressure (needs some work on that), she needs to have a nice heart rate (at times a little fast, but okay), and her blood gases need to be showing good signs (decent but not great.  Her CO2 levels tend to be a bit high and her PH levels fall slightly lower than normal, but not horrible).  Basically, once the patch is on and everything is inside the body, they want to see Karsie breathing on her own, eating on her own (through the mouth) and off of the meds helping her stabilize her vitals.  

As far as a timeline for taking her home goes, no medical worker wanted to comment on that as they only have one week worth of data to give any kind of trend, and it all is shot soon anyway when the organs start to go inside.  However, the social worker, based on other situations that have come in like this said that we're looking at anywhere from 4-8 months being in the NICU. She may surprise us and start really improving much more quickly, but she said that is about average.  So we are hoping for at least a nice little Christmas present and maybe a little Thanksgiving present if we're lucky.  The good news about that is we will be able to hold her and play with her much earlier than that, but until those important things like eating and breathing are being done without any help, Karsie will stay put.  

On a completely new direction, Karsie was moved in the NICU to a much more quiet spot.  The nurses thought that her high traffic spot was stressing her out a bit.  We are also going to be able to give her voice recordings of us for the nurses to play while we are not around.  

We're doing better than we were yesterday, but we're still very sad about all of this.  The meeting was mixed with hope, sadness, thankfulness, worrying, and a whole bunch of other emotions that go with trials like this.  We know Karsie's situation has been turned into a far reaching story, and we thank all of you that continue to keep her in your prayers.  


  1. Kevin and Michelle,

    Something neither of you have ever mentioned before is how much she weighed when she was born. Were they able to weigh her? She looks like she is fairly good sized, but pictures can be deceiving. We are praying for you guys and for Karsie. We know what it is like to have a baby in NICU. Hang in there.

    Jon and Ginny Shellhammer

  2. Holy Father,

    Please provide your precious children, Kevin, Michelle, and Karsie, with rest for their weary souls, water for their dry cups, and new mercies every morning. Come down moment by moment and show them how encompassing your love can be. Breath of God, touch their souls and rest upon them. Their minds are heavy and their days are long, God. Their hearts weigh them down at times. Help them to know that your burden is light. Walk with them until their hearts belive the bounties that only your grace can bring them. As they wait for you, please rest upon them. Father, we cry to you. Be merciful. Be merciful. From deep within our hearts cry. Be merciful to your precious children and let them glorify your name.

    These very same words I prayed continuously when my daughter was in the NICU. From the time I walked away, like no mother should have to, from my little girl's side. I pray these same words continuosly for you and your family. Compared to your little angel, 3 weeks in the NICU was nothing. I cannot comprehend the difficutly that you have, but I can assure you that God IS merciful. He rests upon our souls in times like these. He is faithful and to be praised in every situation. Praise God who gives and takes away! He is good. I am praying for Karsie's complete healing, and I believe that God will provide many miracles for your beautiful child that will be evidence of his love and mercy for a lifetime.

  3. I am happy she has been moved to a quieter spot, that is thoughtful and kind of her caregivers to do.
    I am happy she is trending in the right direction and doing well.
    I am sad she will have to be in the NICU for a long time, but it is not so surprising.
    So many other children before her with this same problem, have needed to be in the hospital for a long time too.
    May it be for the shortest time possible!
    But, think of the longest estimate as real, and anything less as a bonus.
    Protect your expectations and hopes, do not set yourselves up for disappointments.
    It is simply better to expect an 8 months stay, and be happy if it is less, than to expect a four month stay, and be devastated if it is anything more.
    I am a dull, practical person in this regard I know. But my aim is to protect you from sadness.
    We mentally prepare for things, and if we do so unrealistically, we are made more sad.
    If you can prepare yourselves as realistically as possible (by staying informed and understanding what is going on with dear karsie step by step)you can best help her recover and come home to you, with some peace of mind.
    God sends you all kinds of people to help you!
    I am the dull, boring, stay tuned to the practical, "be prepared" person.
    It will work out, it will be over at some point, the crisis will end. Know that.
    God is with you and in charge, you do know that.....
    The timetable for his plan is, as yet, unknown.
    The dull prctical person who loves you says, put aside the surgeons timetable, and yours, and let God say when she is ready?
    Of course we ask for estimates and want to know, when can she come home?
    But no-one knows for sure. It will be as soon as possible!
    Be assured, everyone, but everyone involved in her care and recovery, are all aligned in that one goal.
    Everyone is on your side and hers, all are there expressly to help get Karsie home to you, safe and sound and well, and as fast as they can.
    And I like her cute pink things!
    Much love, from your horribly practical, Aunty Jen.

  4. "whatever is good, noble, trustworthy...think on these things." this is tricia's version of scripture that tells us to think positive. praising God for all the miracles HE has already performed including "simply" creating your beautiful daughter. praying continually.
    Much love, from your optimistic friend, tricia

  5. Jon and Ginny - Since her first hour of life was so chaotic, they really didn't go into a whole to of measurements. They did say that she was measuring around 5 pounds or so, but that was wet weight. She also had a cyst that was filled with amniotic fluid, but we're not sure she was weighed with that. We asked a while ago and they told us all estimations. The nurse her first night said she really thought 5 pounds was about right. She also may look a bit bigger because of her swelling. She has swelled up quite a bit since her surgery, which is normal, but that may give a false sense of her being more beefy than she is. But she definitely has size to her. More than we thought at first anyway.

    To be practical and optimistic together is key. However, we prefer both with a side of hope. At this point we are just marveling at the miracle that we have gotten to spend a whole week with our baby when we started thinking we wouldn't get to spend any time with her. Whatever happens, 2 months, 4 months, 8 months, a year, we will be thankful.