A day in our life

I've been struggling the past few days with a public post by someone close to me that bashed me for them needing to find things out on Facebook.  I want to share completely what a day in our life is like. 

Yesterday started relatively normal....Madilyn was a little fussy because she was having troubles pooping because of dietary changes due to her recent diagnosis of GERD.  Home Nursing came to visit and I expressed my concerns and added the recommended teaspoon of dark molasses to her first feeding.  I no sooner finished the feeding and she started vomiting.  Massive massive vomiting.......coming out of her nose, needing to be suctioned and it wouldn't stop...........it finally calmed and it was time to feed again........this time as I'm tubing her it's coming out of her nose and she is still unable to poop.  I contact the coworker I had promised to work for two hours earlier and let her know that I once again am unreliable because Madilyn's health changes so quickly, contact my husband who has to race out of work to come get us to bring us to the emergency room because I cannot put Madilyn in the backseat by herself with all of the vomiting for fear she'll choke to death or aspirate it into her lungs.  I contact my sisters so one can make sure my daughter is taken care of after school and the other (on her birthday) comes and spends hours in the emergency room to calm me and in case there is anything she can do.  Her ER visit lasted 5 hours and consisted of a CT scan because we always always have to check the shunt, abdominal x-rays to check her intestinal blockage and a chest x-ray that ends up showing something viral.  Blood draws from the lab which show elevated white counts which lead to urine sample collection and an enema for my poor miserable Madilyn who is doing nothing but sleep.  She also spiked a fever during our ER visit.  After 5 hours and much consultation she was given an antibiotic shot, instructions to go home and do a pedialite overnight feed and call the doctor's office at 8:30 am to find out what time we need to be there today for a follow-up.

In between all of this I also dealt with the GI doctor's office trying to figure out feeds that she can tolerate because they were not happy with the dietary changes.  Mind you, this is after reporting to them weekly about the vomiting for 4 full months and it was her primary pediatrician who diagnosed the GERD, not them.  I am still impatiently waiting for the call from Milwaukee Pediatric Surgery to find out when we have to be there for a Nissen Fundoplication procedure to help fix the GERD.  This entire time I am cuddling Madilyn and covered in vomit, waiting for answers that never come and praying I can keep it together while I'm in public, praying that she will bounce back as quickly as things they went bad.

The highlight of my evening was watching Madilyn peacefully sleep on the couch next to me while actually keeping down the pedialite feed she had once we got home and my nephew shows up with crab stuffed mushrooms leftover from my sister's birthday dinner out..............my husband promptly puts them heating as he knows this simple little gift is huge for me today. 

I spent quite a bit of time in the middle of the night watching my husband and children sleep.......watching them so peaceful while I worry about how quickly Madilyn's health changes and where the money will come from to pay for unexpected trips and every day bills.  It's during the night that the things I try to let go of because I can't control them sometimes take over my thoughts and make sleeping very elusive.  I don't know or feel like I ever really sleep anymore, it's always with one ear open in case she throws up...........it's during this time that I am most thankful.  I am thankful for the loved ones closet to me that are always there anytime of any day, I am thankful for my wonderful husband and children that are there to pull me out of my own head and to love me for the total control freak that I am..........and I am thankful for the beautiful baby who is the center of our world.  I am thankful for the kisses I get to wake up to every single day and the fact that she finally says Nana and Papa. 

I have spent months trying to make the people I think should be most involved in Madilyn's life be there and have finally come to the realization that I can't do that.  It is driving me crazy but I have to let it go.  I am thankful for the random friend or acquaintance that has left gifts for Madilyn and donated clothes, rocking chairs, exersaucers and random, unexpected financial gifts that mean the world to us, without them I'm not sure where we'd be, but that's okay too.  I am a firm believer in everything happens for a reason and even though sometimes I question it.............I will patiently wait.......and enjoy every moment that I can.