Upper GI

So today has been an extremely emotional and draining day!  I got to the hospital early today because I wanted to be here for her little procedure.  When the NNP called me, she told me if I was here, I would be able to go with my baby Katea to the radiology room for her procedure.  The upper GI tests the amount or severity of reflux she has, and if it's what is affecting her respiratory distress.  They put 30ml of berium(a dye) into a syringe and put it down her NG tube to her stomach.  It was actually pretty cool to see it fill up her little stomach and travel into her intestines.  I didn't really know what they were looking for, but I expected the procedure to last at least 30 minutes....especially since she gets her food over a 90 minute period and it's not usually until the end of her feeding that she refluxes really bad.  The test was done super quick....too quick for me!  We were in and out of there in like 7 minutes.  The radiologist told me that he did see some reflux, but not enough to be adding to her respiratory distress, and he wasn't worried about it.  I didn't say anything, but I was thinking they should just wait and see....5 minutes was not long enough.  Sure enough, as soon as we took her off the table and put her back into her crib, she started coughing, gagging and she had a bradicardic episode and de'satted for a while....which she did need stimulation to come out of.  :-(  The RT, Becky that went with us kept saying over and over "I'm so sure, as soon as we put her back she starts coughing".....I was glad she noticed.  I just wish they would have waited 5 more minutes to be able to see what was making her cough. 

We wheeled her back to her room and she had another pretty severe episode, which started out with her coughing and gagging.  Charise was the charge nurse today, and thankfully she stopped by to visit...so she helped me try to help her out of it, she was blue for a while, not fun!  That was a bad one.  I held her for a while, and waited for her to fall asleep....and then I left for a minute, just to take a break.....today I am a wreck, and I'm not being strong for her....so I needed to go for a walk for a little bit.   I feel very overwhelmed and emotional....and I don't know why.  I've been handling it so well, I think, up until now.....and today I just feel like it's too much.  As much as I didn't want them to find anything bad on her x-ray, I also wanted them to find something that would be the answer to why she has such severe lung disease....an answer to why we haven't been able to wein her oxygen very quickly....and answer to why she's not breathing yet....a quick fix to make her all better.  I know that was just wishful thinking.  I know she's struggling so bad because she came so much earlier than she was supposed to.  It's just hard to see her go through this!  I feel like I sound ungrateful, but I'm not....I am really really grateful for everything....today is just a bad day for me.  I'm allowed one of those once in a while, right??!!  They told me last night that she's officially the baby that's been here at the NICU the longest.  Not a title I was too excited about.  :-(  

Today is Tuesday, and it's scrapbooking day.  I had totally forgotten about it, but when I went to take my walk, I ran into them.  Scrapbooking day is just a day that the parent support group gets together to make scrapbook pages for the unit.  They allow other mom's to come and visit and scrapbook.  I love going, it's a nice little break from all the craziness and stress of the NICU.  I was glad it was today because it gave me a little while to stop crying and get my mind on something else.

When I was done, I went back to baby's room.....her machine was dinging, she was low-satting.....I looked at her Fi02 and she was at 44%.....WHAT??  That was the highest I had ever seen her before....and she was low-satting....what was going on?  Her nurse was taking care of another baby at the time, so another nurse came in to tell me she would be in in just a minute to talk to me.  I took her out of her crib and held her and then her saturations came up and she started high-satting.  Her nurse Brooke, told me that all hell broke loose after I left.  She had 3 more severe bradicardic episodes....and there were times where her saturations were all the way down to 9, and she was blue with purple lips.  They had to vigorously simulate her to get her to snap out of all of them.  Just to make sure she wasn't getting sick and that she wasn't developing any infections, they immediately ordered a CBC, a blood culture and an x-ray.  Everything came back normal.  Her blood work looked great, her x-ray looked fine, besides the obvious lung disease....and there was no sign of infection, or that she was getting sick.  She was just having a really bad reaction to the procedure that was done, and the berium dye they put in her stomach.  :-(

I kept thinking all day that I wished the radiologist would have waited just 5 more minutes so he could have seen what was causing her to cough, gag and brady.  Just 5 more minutes.  Brooke had the NNP come in and talk to me, and I mentioned to her that I thought the test was too fast.  She actually agreed with me.  They had noted how many episodes she was having, and during the break....when baby Katea was gagging, the NNP suctioned her out and got quite a bit out of her chest area.  Because of the gagging and how high the stuff was that she suctioned, they decided to go ahead and treat her as if the acid reflux was the problem.  I was so relieved!  She was telling me that her esophagus was probably just worn down and it hurt from all the acid coming back up....that's why she was crying, bearing down so hard...and as a result of doing that, she would brady.  At least this treatment plan would give her a break and let her poor little esophagus heal.  And, if it is the reflux that is adding to the respiratory distress, we will be able to wein her oxygen more quickly now.  They placed the NJ tube, through her nose, past her stomach, straight to her intestine.  Because the intestine can't get bolus feedings, there will be continuous feeding 24 hours a day, just at a slower rate.  That will give her stomach a chance to rest and heal, and her esophagus also.  That means we stop the non-nutritive, in case she gets some milk.....they don't want anything at all in her stomach.

The plan is to do a swallow test towards the end of the 2 week period, just to make sure that she's swallowing and that the milk is going to her stomach and not to her lungs.  If it is and her stomach has had time to heal.....and we were able to wein her oxygen, then we'll get to start feeding her through her mouth.  But for now, we just wait and let her heal.

I don't really know what this means as far as a timeline to bring her home.  For sure it won't be until the end of January, possibly even February now.....it all depends on what happens to her after the 2 weeks with the NJ tube.  Today wasn't the best day for my poor baby girl, and unfortunatly not my best day either :-(  I shouldn't have bad days on the days she's having bad days, I need to be strong for her.  Hopefully I'll sleep it off and start fresh again tomorrow.

I am SO grateful for the NICU staff.  I'm grateful for how proactive they are in trying to find out what is really wrong, and trying to fix it.  I'm grateful to them for comforting me and bringing me tissues when I cry.  They are amazing people, and I'm so so glad it's them that take care of my baby!  It's really hard for me to leave her everynight there in the hospital....even after 94 days, it's still hard....but I'm completely comforted and happy knowing she's where she needs to be and she's in the best hands!!

With that said.....Good Night!  More updates tomorrow!