Zoey decides when everything happens

Things have been very interesting since Friday night.  We had just got done holding Zoey and as we put her back, it was obvious that her ostomy bag was leaking again.  Then, as the nurse and I were cleaning her up, the nurse noticed her intestine was pushing out at the stoma sight.  I swore out loud then apologized to the nurse for my language and she said it was ok since the same exact thought had just gone through her head.  At first, there was approximately 2 or 3 centimeters worth of her intestines hanging out of her stomach.  We asked the nurse if we should be concerned enough to stick around or head out for the night and keep us posted.  She said we could go because they were warned that might happen and there's not much they would do.  A short while later we got a call from the pediatric surgeon who said they put some sugar and ice on it to see if it would shrink back down and go back in some because by that point there was about 9 centimeters hanging out now.  By the next morning 9-10 centimeters was back out of her stomach.  It was very unclear what would happen in the next couple of days. 

Our only hope was that she hang on in that condition through the weekend so her surgeon could evaluate things on Monday.  Everything stayed pretty much the same on Saturday which was good to hear.  Within an hour of us getting to the hospital on Sunday, her surgeon walked in (on his day off) out of no where.  The pediatric surgeon had been keeping him updated and apparently he felt he needed to come in and try a procedure that he's only done about 5 or 6 times in his career.  Without getting too graphic, he used a gauze 4x4 square, a long cotton swab, and used those items to put the intestine back into her stomach where it belonged.  This was AMAZING and we couldn't believe what we had just witnessed (and neither could the nurse)!  While Zoey was pretty uncomfortable during the procedure which lasted less than 5 minutes, we could tell she felt better almost immediately after it was all back inside of her.  This is excellent since she hadn't been able to sleep in the last day or two much and she lost a lot of weight from lack of sleep, from dropping water weight from the TPN being removed, and from dumping due to the stress happening with her bowels.  The surgeon said he believes that when the bowel starts coming out in that way it means it's ready to be put back together!  YAY...such a great thing for us to hear!  While he doesn't feel it's emergent, and said he could do this procedure a few more times before surgery if needed, he reassured us that surgery would happen soon.  So I guess Zoey's little tactic worked pushing her closer to having surgery.


The Dr couldn't have come in and done this at a better time since my parents, Auntie Wendy, Uncle Jed and Denise were all en route to visit as well as my sister, Allison, shortly behind them.  Zoey was in a much better state for visitors (but would have lovingly accepted them regardless) and was resting comfortably when everyone arrived.  I truly think she loved all the new voices and loved the attention she got today from everyone.  She started doing her cute, coy things like smirking at things that were being said and opened her eyes for them too.  I LOVE that everyone made it to visit today after a loooong wait!

After all of Zoey's visitors left, we gave her a much needed bath after all of the ostomy bag issues and bowels hanging out the past couple of days.  This was also Zoey's first bath since her line came out.  She clearly loved it as always and looked so relaxed and exhausted that she almost fell asleep in her bath tub.  Not to worry, we held her head above water and made it through bath time. 

With Ray and I both working, we aren't always down in Rochester.  There also isn't quite as much changing daily like it was before when things were more critical (which is good) so there's not always something to write daily.  We know people are religiously following our journey so wanted you to know that we aren't just neglecting it, but waiting until there is enough to write.  Please bear with us in what probably seems like long lapses between entries at times.  We ask you all continue to keep us in your thoughts and prayers and love that we have such an amazing support system out there following all of this still.

On Saturday I also had my baby shower which was wonderfully put together by Allison and Janine.  While I felt guilty leaving Zoey in the state she was still in, I was pumped to do something a little out of the norm from work, drive, Zoey time, drive, work, repeat.  I was so excited to see everyone there who was able to make it and missed those who were unable to attend.  It was a fun time with a neat activity and Zoey and I were blessed with many gifts.  Thanks to everyone for helping make that a special day!!

From here, we hope her stomach holds tight and keeps the intestines inside until surgery.  What we really need is her to grow again and gain more weight this week since she dropped back down to 2.295 kilos in one day.  As I said goodbye to my little peanut tonight, I couldn't help but to start crying because of how amazed I am of her strength and perseverance.  I told her I was very proud of her and knew she wanted to come home soon and that we would do what we can to help her get there.  I asked her to hold on just a little longer and keep battling through until surgery.  She seemed so calm as if to tell me it was ok and that she'd keep fighting despite being tired.  We can't believe what she tolerates and know she has the patience of a saint.  I will likely fall asleep praying tonight asking repeatedly for her to have strength, to help her grow, and to give me the peace of mind that I need to get us through the rest of this.  We aren't sure how long she'll have to stay in the hospital after surgery but that should hopefully be the last hurdle to clear before we can take her home.  Then I think all she has to do is show she can feed and gain weight and we can take her home.  I can see the end of the tunnel, despite it still being in the distance, but it's there.