Saturday, October 27, 2012

Day 27 - Down Syndrome Awareness Month is October!!!

Day 27 - Challenging the 31 for 21 Challenge!

When Bradley was two weeks old he slept through the night.  After weeks of getting myself up every four hours to see if I could get him to wake up and eat - and failing...we decided we should let him wake up on his own and perhaps he would want to eat when he did.  Bradley we were told, needed to the practice of nursing in order to get better at the task of feeding from the breast.  I tried to wake him up in the middle of the night, and it wasn't that he was totally unhappy with the arrangement...the truth was, he didn't even wake up enough to have an opinion.  At two weeks old, I let him sleep and he slept through the night.  I woke up slowly and then sat straight up in bed - terrified!  I bolted from the bed and I hovered over Bradley snug in his bassinet, sound asleep and perfect.  I started to breathe again and waited till he woke up and then fed him a little more successfully.  Bradley and I worked really hard at nursing because I was told that all of this was to encourage two things: his feeding and then his speech.  By working his tongue during nursing he was supposed to be preparing for eating and talking.  Bradley and I worked very hard at this job and he gave us seven months.  Sadly, his esophagus issues started to attack his body and he couldn't find a position that allowed him to eat and not hurt.  Nursing ended and all that hard work has been for naught...he is barely speaking and barely eating purees with a bit more texture...so much for future planning. 

Over the first year and a half of his life, when Bradley was put to bed nine times out of ten, he went to sleep on his own.  We were certain that we were being given a special gift because of all of his medical issues.  One thing was easy and that was bedtime.  Even as I type this I am laughing to myself.  Once Bradley had the G-Tube, well the sleeping issue went south fast.  At first, he was on the tube for so long we couldn't put him down until he was asleep, otherwise he stood up in his crib and that threatened to pull his button out.  With a lot of work and patience, we now have him feeding from 10 pm until 5 am...we wanted him to forget that he is on a tube...and every time he gets completely wrapped up in the tubing - well, we always hope he is too sleepy to understand what has happened to him.  So we got him down to seven hours at night to feed, we figured out how to reduce the amount of neck wrapping incidents, and even managed to get him in the right bedtime clothes to help with all of the above.  I'm not sure that I was feeling smug...I don't usually do that.  But I must have been feeling comfortable.  I thought that I had everything under control, I thought that I had all the files filed properly, the authorizations in chronological order, all the claims accounted for.  Only there are so many times that life itself likes to attack me when I'm not looking.  Eric had some medical issues that left us reeling in anxiety and fear as we waited for time to pass and tests to happen and results to be given that carried good news (Thank God) - but somewhere in there, I missed my dates and a phone call...and one Friday night I trotted down the hall to set Bradley up for the night and realized...I had no more feeding bags for him.  The floor literally fell out of my world.  As I panicked and tried very hard to breathe, Eric had to talk me down from the side of the Empire State Building.  I did the only thing I could do, I cried...really hard for like five minutes.  Eric calmed me down, cause he always does...and then I went into survival mode.  I called Walgreen's to make sure that a pharmacist would work on getting us a case of feeding bags the next day.  Then I prepared 16 oz of Pediasure and was ready to get up all through the night to feed him every time he woke up.  I was ready for my penance and willing to send back my nomination for Mother of the Year award. 

And after months and months - almost a year of not sleeping through the night for him or his parents...Bradley slept for twelve hours straight!  I woke up late and went immediately to check on him since I hadn't heard him all night.  He woke up and smiled at me...clearly we had all needed the rest.  The triumph was short lived though, he wouldn't eat much that whole day Saturday...we finally went to what I think might be his favorite restaurant for Mexican food on Saturday night.  He ate through half of my plate; and that's when I felt like celebrating! 

So sleep is iffy at best in our house.  This week Sydney is vying with her brother to see who can be up the most and for the longest...She has a sinus infection and a cough...so she's up somewhere around 1 am coughing and 4 am with those crazy sinus infection dreams.  Meanwhile, Bradley likes to see full dark and at 5 am when we take him off his pump,  he's decided that that's the perfect time to start the day.  Tonight I get full watch as Dad has a migraine...so since I just hooked him up for the night...I am too am turning in.  Good night folks, may your dreams be sweet and your sleep be swift! And always, sleep fast - you never know how long you're going to get!  ;-)  

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