Yeah, yeah, pics to come, I promise.
I had to get another KUB of Emma's belly today to make sure she was CLEAN (yesterday was a not-so-fun poop day and today's enema produced bright green results-ick) but she is clean so I know now that we have a clean system to work with using our new bag/foley cath enemas. Yay! Thanks to Bridgette for helping me out so much, over LIVE voice-to -voice Internet chatting from AUSTRALIA! How cool is that? I love talking to her and listening to her speak with her Aussie accent LOL
But the topic of this post, the look, well I saw it today in the radiology waiting room. My friend Denise and her daughter Jayden (Emma's age) and her newborn son (born 6/5) were in there. I admit I haven't called her since her baby was born (did send her a text) but things with Emma have been out of control and I knew if she needed something, she would call. She was nursing and when she lifted up her head when I called her name, my heart broke into a thousand pieces. She had the look of "something is wrong with my baby" all over her face and I knew, I just knew something was wrong. And she started crying and I was crying and Emma and Jayden were digging through my purse looking for snacks....oblivious to what was going on. Their focus were on the teddy grahams in the bottom of the purse.
Her son wasn't gaining a whole lot of weight and he was there for the THIRD NEWBORN SCREENING b/c the first one came back with a high chloride reading and they went to repeat it and it got contaminated so she was back, again, trying to get this test done. A dumb*ss nurse told her last week that a high chloride level and him not gaining weight was a sure sign of CF. WTH??!!! You don't tell a new mom this as she is walking out the door! A doctor tells you this folks! Oh, and they wanted to test him for anemia b/c he was so pale and high chloride levels also go hand in hand with anemia(mom and dad are so very tanned). And like all of us do, she got on the Internet and started researching, starting freaking out and started to wonder if her baby boy would ever crawl, walk, talk, go to school.....
In-between sobs she said that she could handle the anemia, but not the CF. She was frustrated that the test would take 2 weeks to come back but scared about finding out the results. All I could do is listen, feed her daughter snacks and offer my love, my prayers and my help if she needed it. I didn't know what to say but I knew I didn't need to say anything at all.
She asked me how I handled everything with Emma (she met me about a week after Emma got out of the NICU) and wondered if I hated God for giving me Emma with all of her "ticks". And I was honest with her....I told her I did hate God at first. Why me? Why us? We did everything right but still......why did you bestow upon us a baby with no butt hole (Becca F will find humor in this). And I told her how sick I was about "God doesn't give you more than you can handle blah blah blah"). And from people telling me this with "normal" babies....I about ate them alive. It's like we were being punished or this was some trial we had to go through for God. But then I read a different story about the Saints in heaven deciding who Emma would go to.....and he chose us because WE COULD CARE FOR HER. He knew that we had patience when other people would not have, He knew we had the open-mindedness to try other things that others would not have thought of, He knew we would travel halfway across the United States for a wonderful surgeon to finally fix our daughter where other parents might not have had the money,the time or the insurance to get her there and finally God knew that we would love her, do whatever it took, no matter the costs, to make Emma ours. When I look at it this way, Emma is indeed, hand-picked by God to be given to us and no one else because we could care for her in the way she needed to be cared for. Maybe Denise listened, maybe not but I wanted her to know that whatever happens, your faith and love always pulls you through, somehow, all the time. God gives us our children for a reason, a reason we may not be able to understand at first.
If Emma didn't have the "whole no butt no poop thing going on", I would have never crossed paths with my wonderful girlfriends and their "no butt-hole" kids as well and quite frankly, my life would be dull without them and their constant support. I love them all to pieces and wish we lived on the same street to go get some margaritas on those hard days.
Realistically, everything is probably fine and it's probably just anemia. But until she knows for sure, time is at a standstill. Please pray and keep her in your thoughts