Thursday, September 24, 2009

Such a Looooong Day!

Don't get excited...this is just a fart smile! But it's cute.

Alright, first we will tackle Karsie's current situation.  Then we will tackle the meetings.  We were at the hospital from 9 to about 5:30, not with Karsie most of the time.  But we did get a fair amount with her.

Breathing:  Still off and doing well.

Pinky:  Looks great and healing well.

Feeding:  At noon today she has been increased to 1.5 hours on 1.5 hours off.  She still is not gaining weight.  She sits currently at 3.17 kilos (just under 7 lbs.).  She had two spitups today. One was fairly sizable and one was just a small amount.  


Family Conference:  We love our neonatologist for this week, Dr. Settner.  We all talked about Karsie's situation first.  Basically she is doing very well except for the weight gain.  They expect her to throw up a bit, but they need to do something to help her keep the calories she needs to gain weight.  With throwing up that makes things interesting.  At this point we are working on condensing her feeding, increasing her calories (until she gains weight consistently), and oral feeding all at once.  They want Michelle to breast feed for about half of the feeds (3 times a day at this point...once with a bottle at 3 a.m. as Michelle probably doesn't want to get up at 2 everyday).  At this rate, barring a setback (which we expect but hope against), she could be bolus feeding in a few days.  If she starts to take everything orally soon thereafter and gaining weight...well...we won't say it, but we'll say there's not anything left.  

Orthotist:  Michelle and Reva did a lot of researching this week and found some devices (along with help from our MOO friends...thank you guys so much) to help support Karsie's omphalocele after she in the car seat and tummy time and such.  The orthotist came by and did a bunch of measurements of Pinky and he is going to create some devices to help protect that during times that we need it.  We're pretty excited about that because it looks like we can use this to support it in her normal car seat.

Dr. Saenz:  He just happened to stop by and chat with us a bit.  He okayed the use of the device the orthotist will create and put in his input.  We really didn't get to discuss everything about the compression wrapping with him, but he did look at it a bit (in fact, he knew most of the doctors that wrote some of the articles of case studies we found).  At this point he says he doesn't think Karsie will benefit from it as there really isn't anywhere for it to go, but we can reevaluate later.  Until Karsie is older she really won't need it other than to keep in what goes in naturally, but we are very happy that he is looking into it.  Also, it looks as though we will need the tissue expanders anyway even with the compression wrapping, but we'll have to play that by ear.

Dr. Gosman (plastic surgeon):  We really only had a bedside meeting, but we got most of our questions answered.  The surgery is relatively low risk.  They put in the expanders to help stretch the muscles and skin so that when they need to do the final surgery(s) they have something to work with and the organs have somewhere to go.  The good news is that most babies go home the next day.  The bad news is that the expanders need to be constantly pumped with more fluid to expand them.  This will be done with a shot, that will hurt Karsie, probably by either a member of Dr. Gosman's team here in San Diego, or us.  Both cases cause an issue with us.  If it's done here in San Diego, that means a trip down weekly.  If it's done by us, that means we are the ones hurting Karsie every week.  We have a hard enough time giving our puppies their shots.  Most likely this surgery won't be until Karsie is a year old and eating and breathing very well for a long time.  The expanders will probably be in for a few months and then they will do the closure surgery.  The closer surgery might be one surgery or a few depending on how much muscle they can get around the organs.  If they can't they will put a patch connecting the muscle tissue (sound familiar?).  

The long day ended with a class we were encouraged to take for discharge.     


  1. wow...what a day. Love the new pictures! She is even more beautiful without all the tubes! Just want to cover her in kisses! :) Sounds like you got a lot of questions answered....but you didn't she going to get a belly button or not? :) Hope you are experiencing the last few days/weeks in the NICU. You are still missed bunches!

  2. We asked about the bellybutton (very nonchalantly) and it sounded like it's possible, but not routine. We'll see. It's like walking on eggshells sometimes.

  3. I left you an address to a blog whom their child had the expander surgery. You should talk to them about the surgery. I am sure they can answer your questions as well.

  4. Wow, I can't believe they had you take a discharge class!!! That seems outstanding to me! Congrats on the news. BTW that is the cutest stinkin picture of her yet!!! Hands down my favorite! Once she gets home she will be the happiest baby ever!!! Love you guys.

  5. I just recently found your blog. Your daughter is beautiful. My second child has had three tissue expanders, on her head, over three years. We went to the surgeon at first for expansions, but it was 3 1/2 hours each way, so I learned how to do it, as we did expansions 3 x week. It was hard at first, but got easier. If there is anything I can answer, please let me know. Your family is in my prayers.