Thursday, May 2, 2013

The Story of A Boy Part 14~ His True Legacy Unfolds

The Story of A Boy Part 14: His True Legacy Unfolds

If you are still reading this story~ I thank you~ this has been a long journey to get here. You know the loss, the hurt, the anger and the love.

If you are new to the story~ please go and read parts 1-13....many of them are difficult and painful to read. It has taken me five and a half years to be able to WRITE his story. We are nearing the end of this particular chapter.....but the truth is that the legacy of my Son, the impact he had on those who wanted and loved him ~ that has no end. That my friends will always be a part of me......and I hope by sharing the story with you ~ that perhaps you will take a piece of the hope with you as well.

29 March 2008

For the second time in less than a year~ there we were~ my husband and I ~ in a dark room on the labor and delivery floor ~ me pregnant with a much wanted and dearly loved child~ amniotic fluid almost depleted ~ hearing other babies be born........

However: THIS TIME my friends it was totally different. We were not in a teeny tiny room. I was not sick. There was uncertainty~ no doubt~ I can't even pretend that the experience earlier that night took away ALL of my fear.....but the difference is this time I hade a much larger seed of HOPE.

In the interest of full disclosure I need to tell you that I used to tell this part of the story from a different angle~~ but after reading Donna's Cancer Story and the heartbreak that Mary Tyler Mom felt from the woman who spoke words that I am sure she FELT~ but were so insensitive to others~~and hurt MTM deeply~~~ gods the absolute LAST thing I would want to do would be to cause pain to a mother who has lost, is losing or knows she will lose a child. In self awareness and the beauty of a retrospective view of the events....these are the words I choose now:

48 hours in the penitentiary (AKA the hospital in Pittsburgh).... a TWO hour drive from my home~ I had 10~ yes TEN~ people make the drive to see me and love me....and the seed of hope grew stronger.

31 March 2008

I can't describe how very hurt and angry I was when the neonatologist (per hospital protocol) visited me on the day of discharge. This man who KNEW NOTHING of my history, except for the fact that I was now 20weeks 5 days pregnant with ruptured membranes ~ he came into my room~ doom and gloom~ he said that he agreed with Dr. Fuckface~ that it would be in my best interest to allow them to terminate my pregnancy. He said that because I would not allow *that* his only option was to release me~ back to work ~ no restrictions~ no follow up medications~ and just let "nature take it's course". In his estimation I would deliver this child maybe tomorrow or a few days from now. He cautioned me that if I was having contractions I should go immediately to the hospital~ because he felt it would be too gruesome for me to deliver the child and "have to look at it"....goddamnitalltomotherfuckingHELL~ I was furious. What I wanted to say was "no fucking shit Sherlock, if you had read my damn chart you would KNOW that I just did that of which you speak last May". What I said was: "yes I understand your medical opinion~ yes I agree you have warned me of the risks to me~ you have officially met your 'informed consent' legal responsibility. How soon can I leave?"

I was discharged later that day~ the ride home was much less stressful. My ever so optimistic sister-in-law, who is literally full of hope and love no matter the situation, drove me home.

Once home I placed one call to my OB~ told her what Pittsburgh had said and done. I told her I was not ready to give up ~ I asked her to help me. She immediately agreed. And the seed of hope grew stronger.

One call to the home health agency and I had a nurse visit me the next afternoon. She started an IV~ taught my husband how to hang a new bag of fluids when this one was empty. Gave him the schedule on when to hang the antibiotics. She gave me many suggestions on how to AVOID infection~ warned me of the signs~ and she left. She came every other day for the next 5 days. Friends and family came and cooked dinner~ helped with my dear toddler son, did laundry cleaned my house~ while I lay abed ~ complete bed rest~ only up to go to the bathroom. And with every passing day the seed of hope grew stronger.

Now~ I pretty much have the ABSOLUTE worst veins possible. It takes even the most experienced medical person at LEAST two tries to get blood and usually 3 tries to get an IV started. So there I was at home~ they have to change the IV site every three days (to reduce the risk of infection). By this time I was 21weeks 3days. No sign of labor, no sign of infection~ WHEW! And the seed of hope grew stronger.

What I needed was a PICC line~ an ultrasound guided insertion of a catheter to deliver fluids and antibiotics. You cannot do that at home. My OB wrote a script and instructed me to take it to a local hospital~ they would put in the PICC line. She warned me that they too would be doom an gloom....but if they discharged me after the procedure she would continue getting home health for me. She said that we were in this together~ and she was going to see me through until the end. And the seed of hope grew stronger.

4 April 2008
21 weeks 2 days

I was very nervous about going to the hospital~ the experience in Pittsburgh had taken it's toll on me. I was afraid that it would be the same here. Scared even that they would do an ultrasound and my daughter would be dead......clutching the very petri dish in which William once was~ and a second one in which my daughter once was~ bolstered with love and support of family and friends~ I went to the hospital for the PICC line. After some initial confusion and the whole wait? what? how far along are you? when did your membranes rupture? telling of the story at LEAST 3 times~ they decided they should do the PICC line on the labor and delivery unit......and with that I was wheeled up and ushered to a room.

If I live to be 100 (and yes I know I say that a lot) I will never, ever forget what happened next. The room was bright, sunny, welcoming. The nurses kind~ realistic on what the outcome may be~ but respecting and supporting my decisions. Turns out~ when you are admitted to a hospital where your physician does not have privileges~ they "assign" you to the rotating OB practice on call~ GAH!!! WTF? I have to go through THIS song and dance AGAIN??

But as with everything else with this pregnancy had been: this time it was different. This time a doctor who I had never met before~ strode into the sunny and welcoming hospital room~ quite deliberately she introduced herself to me and my husband. And the first words, I mean THE FIRST WORDS she said to me after telling me her name were "I will be taking care of you today. I want you to know that I have personally had a patient who ruptured membranes this early and the baby LIVED~ AND WAS HEALTHY IN THE END". And the tears of gratitude came. And the seed of hope grew stronger.

She also said "I'd be more comfortable if you would agree to be admitted here. I'd like to be able to keep close watch on you and be able to help you immediately should something happen. I'd like to not only give you fluids but also put you on a prophylactic antibiotic regime. I don't think constant antibiotics are the way to go~ I'd like to do 5 days on 2 off~ so you do not become resistant to the antibiotics. I'd like to do an ultrasound today and then once a week after that. You're in for a long haul~ can you handle it?" Through tears of hope I said yes. GODS I LOVE THIS WOMAN. She marched herself right in there~ she was efficient, knowledgeable and deliberate....but she presented the facts in the MOST tactful and least HURTFUL way. I told her that she was THE FIRST doctor who had ever said anything hopeful FIRST......and I thanked her~ with all my heart I thanked her....and then she said "you can thank me after you take this baby home with you".

And the seed of hope became a flower.