Today was your due date but after a roller coaster ride, we got good news!

The last 24 hours has been quite a roller coaster ride!  For those of you who were on that roller coaster with us...thanks for jumping in, buckling up, and hanging on.  This is precisely why we haven't told most of our audience her tentative surgery date because that has changed 3 times in the recent past.  Zoey was originally scheduled for surgery on April 23, and was moved to April 18th after a lot of weight gain in a short amount of time.  Then they had to take the central line out so she started losing weight while working on increasing her feeds.  She lost so much weight so yesterday morning the surgeon said he's 95% sure he won't take her into surgery Thursday because she's too little again.  Which started the roller coaster ride.

We were in a crunch to find something to help Zoey gain weight so we could hopefully get her in for surgery on the 23rd still because if it wasn't then, we'd be into May since the surgeon is out the last week in April in Russia...hence the push for her to make weight by the 23rd.  So after LOTS of discussion between the Fellow (someone studying to be a Neonatologist) and Ray, they decided to put her under, intubate her, and have a radiology team(since it's guided by x-ray) place a catheter into her neck and down into her heart so they can give her an even higher dose of tpn with even more lipids and sugars and calories to help her plump up again.  Crazy as it seems, and I didn't really believe it yesterday either, but this was the least invasive and best option they had at this point based on our hopeful "deadline."  Ray started this whole conversation and process while he was at work, then passed it on to me and needed us to decide what to do while I was at work, and then he left work to be with her through all of it.  We both cried many times yesterday and I did what I could to hold things together while at work the rest of the day.  Sorry for those of you I also made cry in the process but thanks for the shoulder to cry on. :-)  Zoey, as usual, went through it all like our little ROCK STAR and handled extubation well at the end.  She was very out of it last night and still seemed like she was sedated when I got here at 9pm.  They had given her Tylenol for any discomfort and they said it seemed to be helping.  I was flooded with emotions, mostly because we've been here 14 weeks, and I felt terrible that she was having to go through yet another procedure.  We just hate having to put her through more but didn't feel like we had a better option if we want to take her home one day.

So this morning, we came in hoping that she would start gaining weight to make it by next Tuesday, had both adjusted our work schedules accordingly, and then ran into the surgeon on our way in.  WHAT?!  You say you want to do surgery tomorrow anyway?!  I couldn't believe my ears and I think they noticed my mouth drop open!  Apparently last night she miraculously gained some weight and is at 2.2 kilos.  He wanted her to be 2.5 kilos originally, then on Sunday he said he'd take her between 2.3 and 2.5 kilos, then today said let's just get it done so she can grow...2.2 kilos is close enough and waiting 4 more days won't make a big enough difference at this point.  WOW!  How bipolar do I feel since last night all I could do is cry at her bedside until I went to RMH and today I'm laughing at her bedside after hearing this good news.  Bipolar...hormonal...all the same at this point!  I think knowing my due date was today made all of this so much harder to handle emotionally.  And Zoey didn't seem to notice a thing and took it all in stride like a champ...like usual.  She really showed me up yesterday and I told her she's tougher than her Mommy which is a pretty big challenge.

SOOOOO....Zoey is scheduled to have surgery tomorrow 4/18 sometime in the afternoon.  The plan is that they will open her back up, reconnect her intestines, insert a G-tube (which allows us to feed directly into her stomach if oral feeds take some time), create a port to let infectious stuff ooze out over the next few days, do a cholangiogram in her gallbladder to help flush the tpn crap out, and possibly take her appendix out.  I thought he was kidding when he mentioned the appendix but said she didn't need it (and joked that only cows and rabbits do to process the grass they eat) and it's only purpose was to keep him up at night.   We still don't know what the appendix does but she doesn't need it so he might get rid of it to alleviate any potential future issues.  Oofdah!  That's a lot!  But she can handle it.  So there probably won't be a post-surgery update until late tomorrow based on when they will take her to the OR and how much has to be done.  Today and tonight we'll say our prayers and hope he will still take her tomorrow and that she'll make it through all of it.  It sounds like they'll keep her intubated for a day or so after surgery just so they can keep her on some pain meds and not worry about her having any desats or other breathing issues since the fentanyl usually keeps her too relaxed to breathe effectively (like her parents who also don't like to breathe when on pain meds after surgery).

Sorry for another really long post.  At this point we have no idea how long she'll need to be here after surgery.  What we know at this point is that she just needs to show she can feed and grow like a normal baby and we can take her home.  How long that will take...who knows.  But with the G-tube, we hope it will help get us there quicker since that's a built in back-up plan if she's not gaining weight from oral feeds.