Tomorrow Gracie will have been angel for 11 months - One year ago today Gracie was rushed to the hospital from her doctor's office - she was in for a regular checkup and they heard a heart murmur and she had low oxygen. We were scared and confused and had no idea how life was going to change. They couldn't hear her heart murmur at the hospital and they said that was "normal" with babies - but they sure didn't know why her oxygen levels were low...... We wouldn't know until the following day.... Gracie did not want to be in bed, she wanted to be held - she was bigger now and wanted to be moving or a minimum be held- this was a big difference then when she was in for RSV - We sure didn't any answers on this day - so I went home and looked up on WEBMD - low oxygen for infants and it immediately indicated a heart issue - that quick and the hospital wasn't sure?
They did a ecocardiogram the following afternoon.... Gracie did not like being still...finally after singing and rubbing her head she fell asleep and after 90 minutes - they asked us to go in to a different room... I knew then it was serious, but still clueless as to how serious it would be. What I remember is just before the Dr. came in - I went back in to Gracie's room and I heard an intern turn to the cardiologist and say - how did we miss this when she was here before? My fear increased at that moment and when I went back to the other room I took my daughter's hand...and waited.
I remember that the 2 doctors came in and then then the nurse with a Kleenex box - the lump in my throat grew. The doctor drew a heart and explained that she had 2 holes between the upper chambers - I knew this could be fixed and waited for more news. Then he said - I am not concerned with the 2 holes, actually it is helping her right now. The arteries in her left lung are extremely small and she has sever pulmonary hypertension - and then he said, there is some medicine, but it is very severe and there is no cure.... We will send her to Uof M - Mott children's hospital. I am sorry but it doesn't look good. We didn't even know what questions to ask - we simply held on the heart drawing, cried, held on to each other - We were in SHOCK - speechless. Then we walked back in to Gracie's room and looked at this sweet baby and wondered how, why. We wanted to grab her and run - like that would make a difference. How could this happen. I had to have hope and I had to give hope to my daughter.
This was the beginning of our journey to say goodbye. I am amazed that 1 year later and I can still feel it like it was this minute - the shock and disbelief. I fully understand that people can only take in so much during these types of situations - we just didn't ask a lot of questions and felt dumb at not knowing what to ask or say. Hoping they were wrong - this could not be happening - these horrible things are the things you read about and they happen to other people - but now it was our journey to take.
The 1 year anniversary is approaching fast and I find myself resisting it as much as I did her 6 month anniversary and birthday. Amazing how raw the pain can still be at times and I am always left with that it feels like forever and it feels like yesterday at the same time.
Most people think it is morose to relive these memories - but you can't help yourself and it would feel very dismissive/disloyal/ etc. to not remember. But the truth is that you don't have to work to remember you just do - it is always there and will be always.
Gracie you are loved and missed daily - always and forever. Fly with the angels.
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