Saturday, September 12, 2009

Back to life, back to reality

Back to work this past week after being off for 17 months. Craziness. It was such a wierd feeling to go back, especially after completely exposing myself on this blog, and knowing that many people I worked with read it occasionally. But yet, here I am again. I thought I was done with this blogging stuff, but it has been awhile since I've updated Alyssa's development...and well the ICU setting this week had me looking back in Alyssa's "diary" and remembering all too well the sounds of the so familiar alarms and chaos of an intensive care unit.

I've had anxiety for the past two weeks thinking about returning to a floor that has such a different meaning to me now. I've had 2 weeks of sleepless nights thinking about the first time I am going to see someone on long term ventilation, or on nitric oxide, or an osscilator...oh ya, never mind, that is for little people, not big people, or completely full of pumps for meds, or paralyzed and full of edema, or even worse yet...coding. As scary as these things may sound to someone who doesn't work in the hospital, when this setting is a part of your job, you become sort of accustom to these kind of things. I work on a cardiac surgery floor, people will be sick, people will die, but more people will be fine. So my first week back, I open the door to the ICU and of course one of the first things I see is the big cylinders of nitric oxide...ugh...this friggin sucks, can I go home? No. Get over it, this is my job. It's not the same thing. And it's not, well not completely, and really besides a little anxiety which I am really good at covering up, one little meltdown talking to a really sweet nurse in the ICU, and meeting a patient's wife who coincidentally started telling me about twins they had lost years ago....the week was ok and no harder then I thought it would be.

I came home after the week and grabbed Alyssa's little diary that I wrote in when she was in the hospital and flipped it to May 28th..."Things have quickly changed in 48hours...we had two scary calls, the first on Monday to let us know they were going to do a spinal tap to rule out meningitis and the second call to let us know they were putting you on nitric oxide to help increase the pressure...you are on 70% O2, your right lung has collapsed and your color has changed to a grayish...yes I am worried, but you will pull through, you have too, because I can't imagine losing you or Jessica. Also your HR has been close to 200bpm, which is rather frightening. You have pneumonia and have become septic. Tuesday we got another call saying things have become worse, an air leak noticed on x-ray, O2 increased to 100%, so you were put on an oscillator which causes your entire body to shake, and you were given a "paralyzer" medication to keep you still...breathing like a hummingbird. Dr J looked worried in rounds today, she had watery eyes when she told us you were really sick, but she told us we weren't at the point to discontinue treatment yet. We believe you are strong and are going to make it through this, keep fighting and get better soon so we can all go home together. We love you so much, Mommy"

Why do I do this to myself and go back to remembering when Alyssa was at her sickest, when she is sitting here right beside me, healthy and happy. Damn nitric oxide. Next week will be better.

In the past month, most of my worries about Alyssa's development have gone away. I was seriously worried that she would never crawl, and never walk. She seemed "floppy" to me, or low tone, and she tried so hard to get on all 4's but would always flop to her belly. I worked with her, and did everything physio told me to do, but nothing appeared to be helping...I thought for sure she had some form of cerebral palsy. But then one day, in Nfld actually, she decided she was ready and shocked us all....and she hasn't stopped since. She crawls, she pulls herself up, and she's sort of taking steps holding on to our hands, and almost starting to cruise...it happened so fast....our little girl is growing up, and developing at her own pace. So she's still a couple months behind her "corrected age (CA)" (5th percentile), and probably won't catch up to her actual age by the time she reaches 2...in the big picture, no big deal, she's out of the NICU, and she's on the move. She weighs 18 1/2 pounds (5th percentile for CA) and eats more then Emily does. She had a real shitty start to life, but look at her now.








So there you go, back to work, and the chaos of early morning routines and trying to get suppers organized the night before, back to the real world that I so easily forgot about.

3 comments:

Anonymous said...

So ironic I would call you today of all days after thinking of you so much over the last few months. So here is the update on how you are doing. You and Keith have been through so much and you continue to have such a positive attitude toward everything. I admire your strength and commitment to your children. Know you are an amazing mother and an inspiration to many.

Angela

Kendra Stiles said...

Hi,

You do not know me, but I went to high school with Keith and the rest of the crew in JR.

I stumbled upon your blog because of a facebook group that was created when the girls were first born and have read your blog quite regularly since then and prayed for your family, but I have never once commented...there were no words I could possibly that were going to make you feel better.

But today, I just wanted to tell you how beautiful Alyssa is, she looks a lot like her big sister.

I am sure the pain from losing Jessica and everything else your family endured will never truly be gone, but I hope you are doing better with each passing day.

jdm said...

Hi Kendra,

Thank you so much for your comment. I always see when the blog is read, but I never know who is reading it...and I've always been so curious to who was following our story, and what the reason for following it was, mainly curiosity I suppose.

Initially it was mainly family to get an update on the pregnancy, and then more and more friends seemed to be reading...probably out of hope, and prayer for the girls...and then maybe my hatred for the world and say anything attitude had people wondering what I was going to say next.

Regardless, I appreciate you introducing yourself...and thank you for your kind words.

Jenn