I attempted to let my feelings out and talk about it with a friend online last night...which resulted in me having a near nervous break down...didn't know I still had it in me. I could be reading or interpreting it wrong, but it seems like everything that was told to me during that time did not show up on the autopsy. Last night I think I cried harder than I did when he died. It lasted for hours. I nearly hyperventilated and sat in the shower for a while and finally went to be around 3 am when I had to be up at 7:30. I guess I needed that. I felt like I was fine, didn't feel like I still needed to mourn him or anything, well I guess I never really mourned him in the 1st place. I felt a peace, and now white pages full of words and rereading post just brought all those painful memories back like they happened yesterday. I ended up reading every word I wrote from November to January 30th. I read how optimistic I was, how much faith I had that God would heal him, and finally I realized how much grace God had over me for me to walk through that storm in our lives and come out still standing. I realized today how little faith I have put into our current battles. I expected miracles with Logan, I truly expected him to be fine, to live, to grow, and eventually BREATH! I did get miracles from Logan. Life lessons I will never forget. How kind strangers can be. He taught me that there are people that care for others still and expect nothing in return. Blessing are still abundant in our lives, we have great friends and family. God continues to provide for our every need. There are still kind strangers willing to help others. I have been seeking harder than I have in a long time. After Logan died, needless to say, I didn't expect medical miracles anymore. I would love to see Jesus come heal the blind and have the cripple stand up and walk. That would nearly solve all my problems, unfortunately my optimism and faith have been shadowed with negativity, doubt, self pity lately.
I have not allowed these thoughts to knock me off my feet, but man I have nearly fallen to my knees. I wake up every day and fight with him to eat, give him 10+ doses of medication he requires every day, clean the vomit, stretch him, hold him, listen to his non stop whining, I'm there for every therapy rather I have to take him to it, or just have him ready when they get to my house, the none stop doctors appointments, the never ending changes of medication and medication doses. Then still be there for Andrew, Ava, and Jack not to mention all their none stop whining. I told Jack how wonderful life would be if I had a switch to turn off my hearing at will...he didn't agree :-) After reading what life was like this time last year, you would think I would be jumping for joy and praising God that this is a piece of cake and not life or death. I don't mind taking care of Jacob. I'm his mom, it is my job. I'm just so discouraged and I could really use a little miracle with him. He has regressed completely anything that he did before, he stopped doing now. He hardly eats at this point. He does nothing but cry. That's a lie he still smiles and laughs when I sing to him, but no steps, no head holding up, no pulling his body up with his arms, no attempts to roll, nothing. Not to mention how he vomits up half his food every day and never get rid of his cold symptoms.
God continues to comfort me and I know he is there he is holding me up when I no long want to stand, without his grace I would have fallen. Last nights tantrum was good for me it was a release of feelings I could not let out 9 months 1 week and 6 days ago. Though I paid dearly for my tantrum last night with a stuffy nose and headache that would not go away today...it still just needed to happen.
I am going to scan the autopsy report at one point and post it, but just a quick recap of what I took from it...all I wanted when I got it was why he got so sick...I still have no answers. The report started out by giving a brief history of him being an ex-28 week triplet and ended by saying he had a rapid deterioration over 2 days and pretty much ended that I killed him. Something along the lines of after the infant rapidly declined over the course of 2 days mechanical ventilation was stopped at the request of his mother. It did mention prior to this his hypercarbina (high CO2 levels) and his history of chronic lung disease and surgeries, but nothing was mentioned as to what his Co2 level was, there was no mention of his nearly non existent urine output, etc. The picture that was painted for me that day was that he was septic from some kind of infection in his body (I was told it started from a UTI), that his organs had shut down, they said there was blood coming out of his g-tube etc. This is why I made my decision. I figured if he lived at all that he would probably require mechanical ventilation for the rest of his life, that he would have essentially been a vegetable, and that he would have had extensive organ damage from the Co2 and acidosis. There were no lab values in the autopsy report, I did not let them cut his head, so there was nothing mentioned about his brain. What it did say was that there was no sign of infection in his lungs or anywhere else in his body. There was no pneumonia or infection in his lungs, his kidneys and bladder were unremarkable. The only thing that was noted at all was mucus plugging in his lungs, liver, and calcium deposits in his kidneys. It paints a picture of a sick infant, but never tells me what made him so sick. His cause of death was me having the ventilator turned off even though I was told he was already brain dead. So, I have no answers still, and if anything I have more doubt that I made the wrong decision. He might have died anyways, but at least I would not have it on my shoulders.
Today I pretty much listened to 2 songs from my favorite group ever Third Day. There songs just seem to speak to me and comfort me when I am about to loose my mind.
WHEN THE RAIN COMES:
When the rain comes it seems that everyone has
gone away
When the night falls you wonder if you shouldn't
find someplace
To run and hide
Escape the pain
But hiding's such a lonely thing to do
I can't stop the rain
From falling down on you again
I can't stop the rain
But I will hold you 'til it goes away
When the rain comes
you blame it on the things that
you have done
When the storm fades
you know that rain must fall
on everyone
Rest awhile
it'll be alright
No one loves you like I do
When the rain comes
I will hold you
Revelation:
My life has led me down the road that’s so uncertain
And now I am left alone and I am broken,
Tryin’ to find my way, tryin’ to find the faith that’s gone
This time, I know that you are holding all the answers
I’m tired of losing hope and taking chances,
On roads that never seem,
To be the ones that bring me home
Give me a revelation,
Show me what to do
Cause I’ve been tryin’ to find my way,
I haven’t got a clue
Tell me should I stay here,
Or do I need to move
Give me a revelation
I’ve got nothing without You
I’ve got nothing without You
My life has led me down this path that’s ever winding
Through every twist and turn I’m always finding,
That I am lost again (I am lost again)
Tell me when this road will ever end
Give me a revelation,
Show me what to do
Cause I’ve been tryin’ to find my way,
I haven’t got a clue
Tell me should I stay here,
Or do I need to move
Give me a revelation
I’ve got nothing without You
I’ve got nothing without
I don’t know where I can turn
Tell me when will I learn
Won’t You show me where I need to go
Oh oh
Let me follow Your lead,
I know that it’s the only way that I can get back home
Give me a revelation,
Show me what to do
Cause I’ve been trying to find my way,
I haven’t got a clue
Tell me should I stay here,
Or do I need to move
Give me a revelation
I’ve got nothing without You
I’ve got nothing without You
Oh, give me a revelation
I’ve got nothing without You
I’ve got nothing without You
Now on a much brighter note, Jacob had 2 appointments today. 0930 this morning he seen the pulmanologist in St. Pete. She pretty much said the same thing everyone else said that he needs his GI issues fixed. Now if we can only get that through to the GI doctors head! She is also giving us a medication to dry up some of his secretions i.e. his drool which he chocks on because he refuses to swallow. I will try it and see how he does.
We had a nice lunch in Ybor at the Spaghetti Warehouse. Then we went home for nap time.
At 3:30 he had an appointment with the low vision doctor at Lighthouse for the Blind in Winter Haven. He examined his eyes and upped him prescription to +5.00 on both eyes and a bunch of other numbers behind that...
Tonight was date night with Ava. I invited along my friend Jennifer and her son Josh. We went to see our 1st movie together since she was a baby. We seen Megamind on the new IMAX screen in 3D. Ava got scared toward the end, took off her glasses and said she was ready to go home. LOL I convinced her it was okay and we did finish out the movie. I think she really enjoyed it and I think in the future she is going to always expect "movie watching glasses" every time she goes to a movie theater LOL
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| Ava and Josh getting ready to see Megaminds |
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