As each new year comes - it seems everyone takes time to reflect on the past year and sometimes you want some of the moments back and othes you are glad they are behind you. I can honestly say that 2009 has been the absolute hardest year of my life and I know the it is the same for my daughter. However, a simple turn of the page of calendar doesn't take away all we have been through and I know it is not "over or behind us" - it is always with us and we continue the grieving process.
In February we will make our annual trip to the U.P. for the Winter Carnival at my step daughters College - these kids build absolutely amazing snow sculptures. But what keeps coming up for me is that last year on that weekend is when we got the call that Gracie wasn't feeling good, seemed like a bad cold and then she started to vomit - so I told Katie to take her in to be checked out. Well Gracie was diagnosed with RSV and it was serious. We headed home on Monday and went straight to the hospital - she was just shy of 6 weeks old. Going in to that hospital room that evening, she was on oxygen and looking up at me and you could tell not feeling well. I got to hold her but she was having a hard time breathing and they had me hold an additional O2 mask by her face and it would bring up her levels. I was worried, but had no idea what we were in for. The next morning Katie called and said they were putting her on the ventilator to help her breathing - I headed straight for the hospital and when I got there she was intubated. I couldn't believe it. The doctors kept saying it just takes time and that w/RSV you never know how long or where you are at on the roller coaster. After awhile I sent Katie home for a bit - about 20 minutes after Katie left, Gracie turned blue, her levels dropped, heart rate dropped and they had to work on her to bring her back up - That was the scariest moment in my life to that point - I asked the nurse if she was going to make it and she said they really didn't know. Wow - I couldn't breath - I didn't know what to say or do- I couldn't imagine her dying, it couldn't happen. I think I sat there in shock for awhile. Then they came in and decided to move her to ICU and there was a nurse with her at all times for the next 3 weeks. After another "semi-crash" the doctor came in and said - I think this will get alot worse before it gets better and I think we are in for a very long haul. Again it was like a smack across my face - worse?? how much worse for heavens sake she already has crashed twice and she is hooked up to kinds of IV's, ventilator, put in a medical coma so she remains calm and now they were talking about paralyzing her too - my mind could not comprehend it all.
We had no idea that road we were beginning to travel would wind up where it did. So for the next 3 weeks - we spent endless hours at the hospital and watched her struggle countless times and watched and prayed for her monitor's to show the right #'s and held our breaths that when they had to rescue that she would return to us. In retrospec - it was nothing compared to what would follow in May. But she fought so hard to stay alive and through it all they NEVER discovered her congenital heart & lung defect - Does anyone else think this is wrong. How do you have a sick baby - whom you are doing daily lung x-rays on and can't see that there is something wrong with one of her lungs - never detected any heart sounds and she had 2 holes in her heart. Couldn't hold her O2 levels very well even after she was declared free of RSV and no one checked for a heart or lung issue....I know that they arteries/blood vessels are very small - but come on - If I can type in low oxygen infant on WEB MD and get a heart issue - then why didn't they do more. Yes she had RSV but it was the defects that she had that allowed it be so bad.
I guess I also feel guilt - why didn't push for more? What could we have done more? I didn't think to look for low oxygen until she was hospitalized in May.. Even they day they discovered it - I happened to walk back in to her room when one of the interns turned to the heart doctor and said - how did we miss this when she was here before? Well they never did an echo then, but they should have - should have checked everything.
When Katie took in back in the end of March because she was having problems breathing - they said no she is fine - just keep giving her breathing treatments. They didn't do any further tests - really - is it that normal for a then 3 month old to have trouble breathing - a month after RSV? We had doctors at UofM tell us that she may have had a chance if Covenant had diagnosed her in February - none of them could believe that they didn't diagnose this when she had RSV - more like appalled by it quite frankly.
Today while reading one of the other moms blogs - I found out that one of the other babies that was in Gracie's room when she first came in had passed away this year too. I guess it just made me feel the pain for them again too and know that this Christmas - 3 out of the 4 babies in that room are gone and understand the pain we are all feeling.
So it is a new year and I pray for a peace filled, healing, loving year. The grieving process will continue for some time to come, but I will continue to keep Gracie inside my heart forever.
Love you Gracie!!
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