All is Still Well...

..knock on wood.  Karsie did well her first day of condensed feeding.  She threw up twice, but that's well within her normal range.  She also drank a good 30 mL of breast milk tonight and, when Michelle left, kept it down.  Also, we know we put up a video of Pinky a day or so ago, but even from that there is a noticeable improvement of the skin.  It looks very, very good.  We are very excited about that.  Time marches on..

A Plea to MOOs

We're doing an all out blitz for information lately on tissue expanders versus compression. We're still not sure we have all the information on each of those, but we definitely don't want to put Karsie through a surgery if she doesn't have to.  

Therefore, if you're a MOO (Mother of Omphalocele) or know one, or know information about:

1.  Compression Method/tissue expanders; and

2.  Who does them around us in Southern Cal (or the west coast) 

...please let us know.

Thanks.

Update (9-21)

Weight:  Karsie dipped a little today to 3.185 kilos.  This is not surprising as it seems to be her trend.  She gains and then she dips a little.  Hopefully she continues to gain.  

Feeding:  Karsie did not throw up again last night or this morning.  She also got a lot of milk breast feeding today.  Good news:  They are starting to condense her feeding today.  She will be getting three feeds in 2 1/2 hours instead of 3 hours.  Most babies take their full feed in a half an hour (a full feed roughly being 3 hours worth on average).  Karsie is currently getting 23 mL an hour, which would give her 69 mL in 3 hours.  We want to move her to taking all 69 mL in a half an hour instead of pacing the feeding hour by hour, so they are condensing her feeding.  So, instead of giving her 69 mL in 3 hours, they are giving her 69 mL in 2.5 hours.  This should go for a couple of days (assuming she handles it) and then they will start giving her 69 mL in 2 hours, and so on and so forth.  

Surgeon Meeting:  Please pray that this meeting goes well.  We absolutely love our surgeon and want him to continue with Karsie, but we know that he is not in practice doing compression wrapping.  We're going to ask him to look into it, and we really want him to seriously consider doing it as it will save Karsie one surgery.  Surgery will put her back a bit (depending on when they do it) so any time we can avoid that, we want to.  

Breathing:  We felt like we had an option.  Karsie's nasal cannula was supposed to come off today, but we also wanted her to start condensing her feeding.  When they start to do this, sometimes babies need a little extra breathing support.  We felt like we could have either taken her off of the cannula or start condensing her feeding (doing both would likely alter either the breathing or the feeding).  At this point we are of the belief that feeding is more important to start now than breathing, since she is so close anyway.  So, we asked that she stay on for a bit longer so we can start condensing the feeding.  Who knows she might be off anyway when Michelle goes back tonight, assuming Karsie handles being off of it and her feeding.