Kumba!!

So Kumba is the title because that's how this weeks roller coaster felt like....as my last post mentioned this is a big draining roller coaster....since the last post Gorda turned out to not have an infection for that 11.30.11 episode that's the good part, the bad part of the "Set-back" is when they re-started feeds they had to start at 5ml's instead of full feeds which was 26ml's prior to that episode.  Mike & I have realized how much of all this is usually a "Double edge sword"........For instance on Tuesday 12.6.11 Gorda had her 3rd eye exam since birth this is a routine check they do on preemies to check for ROP Click Here (Info. on ROP)  and for the first time it came back positive but apparently we were told she only has Level 1 & that most preemies get it but grow out of it.  GOD I hope so I don't want my baby to ever have vision problems.  See the reason we say it's like a double edge sword is in this case the oxygen helps her breath (she is still on a nasal cannula) & without that she would not be able to breath on her own yet, but the other side of it is that the more time they are on oxygen the more chances there are on her vision being affected (higher levels of ROP).  So I was really sad to hear that Tuesdays exam came back with level 1 and I just hope she grows out of it & they get her off oxygen soon.  So as the week went on my baby had another episode on Thursday 12.8.11.  This time they called from the hospital at 5am, I already know when I hear the phone ring at that time, it's something bad! The nurse practitioner Julie started to tell me the details she basically had Bradycardia aka Brady's & was Desatting to the 30's (Normal for her should be in the 90's) this episode was one of the worse ones where they have to "Bag" her to bring her back, the scariest part is that Julie said she almost didn't recover from it.  You try and hear your daughter almost didn't recover from an episode and not want to just curl into a ball & die....maybe not literally but I can tell you that just the thought crossing my mind makes me sick.  I could not go on if anything were to happen to my baby!!!!  After they bagged her it was so much pressure, it apparently made her throw up so much it was coming out through her mouth & nose.  (Imagine how exhausting it is when us adults throw up, so I hate to picture that she was throwing up so badly)  All I could think about is how much my baby should be hurting how much pain she's in from this episode there was no way I was going back to sleep even if at the point they said she was "ok now".  I had to get to my baby's side, so I got dressed & headed to my home away from home, when I got to the hospital I got to carry her.  Apparently that's what she needed was some comfort & love when I got there she was fussy & as soon as she laid on me she passed out.  I was shocked because usually after episodes they won't let you carry the baby for at least 24 hours.  So of course as always after an episode, feeds were stopped again, antibiotics started, blood culture, urine culture (I just found out they actually put a catheter in my poor baby to do this) basically the drill to rule out things to see what she has.  They always think it's an infection that's why they start antibiotics right away.  So basically my entire Thursday was in & out of the hospital with Gorda, by the end of the night you can see she was super pale & she had to get her 4th blood transfusion since she was born.  Well that's this past weeks update, thankfully from this episode as last weeks nothing came back positive.  The cultures were all negative, & they restarted the feeds by the next day & surprisingly not at 5ml's they re-started at full feeds her 26mls'.  They believe her episode was caused by reflux (Heartburn), so I'm happy with the end result, but as always her episodes hurt me like hell.  I wish my baby didn't have to go through this, why her is all I can think sometimes, why me, we don't deserve this!!!!