Wednesday, May 29, 2013

Coincidence? I think not....... on losing my way and finding Faith and Hope again.

29 May 2013

Hello gentle readers. First off I would like to thank the wonderful and talented DeBie Hive for inviting me to do a guest post. I am humbled and honored that she chose me to be part of this amazing opportunity of sharing. It is in large part because of her and the support she has given me that I am part of this beautiful blogging world today.

The enormity of coming up with something worthy of sharing has weighed on me since Kelly first asked me if I'd like to be part of her guest blog feature. Without sounding like a crazed stalker~ I will say that SHE sets the bar pretty high with her knowledge and amazing writing abilities. So here I effort and all......

As is usually the case with me, I have an idea of the subject about which I will write and then 27 things happen and the idea changes a hundred times and when I actually sit down to write (or type in this case) the words just flow freely.........

Today happens to be the birthday of my dear son William. It also happens to be the anniversary of the day he died. One might think that what I would choose to write would be completely about him~ his legacy, his loss and what he means to me. Although *this* post is heavily influenced by his brief but profound life~ like his short life~ the impact and this post is about far more than that.

I have been thinking a LOT lately about platitudes, latitude and attitude. When one suffers a loss or tragedy of any kind~ one expects that it will make other folks very uncomfortable. Many~ in an honest effort to be 'helpful' ~ offer age old platitudes: 'it's God's will', 'God doesn't give you more than you can handle', 'this too shall pass', 'when one door closes another opens' and so forth and so on.

Speaking from a place of having been through several unhappy but  normal life events and what I consider to be more than my fair share of tragedies~~~ I can say I have heard just about every single platitude at one point or another. And mostly (if I am being honest) they don't help me. And sometimes they even piss me right the F*<K off.

Now I am not generally an ungrateful person~ and generally I give folks a fair amount of latitude when it comes to accepting their support and love for what it is..... even when I find their words not especially helpful and in some cases actually *hurtful* to me.

My true friends know this about me~ and they grant me the same latitude~ they know if I snap at them, or say something unkind in response, or simply burst into tears~ they KNOW it's me and my emotional reaction~ it's not them.

I cannot choose what other folks say. I cannot choose how *they* will respond to what I say. Often times (much to my dismay) I cannot choose what tragedies befall me. What I CAN choose is my attitude toward all of the above.

In a life filled with even the most 'normal' amount of chaos and heartache~ one could easily become a very pessimistic and nonbelieving soul. Add in a few extraordinary tragedies~ and one could almost certainly cave under the pressure ~ and be doomed to a bitter and resentful existence.

One thing I have held onto throughout many a difficult time is my belief that everything *does in fact* happen for a reason~~ even if it takes days, weeks, months or even years for me to *see* the reason and understand it's purpose.

 I could name countless personal examples of how just when I needed something it appeared as if from nowhere. I could name countless personal examples of how just when I needed someONE *they* appeared as if from nowhere. I could name countless personal examples of how just when I needed financial or spiritual help *it* appeared as if from nowhere. But unless *I* chose to believe that it is some sort of divine intervention it will mean nothing more to me than simple coincidence.

I am not by nature a religious person.......however, I do consider myself to be a very spiritual person. You see I have to believe that there is something more than just this earthly physical existence. I have to believe that my mother, father, sister, nephew and son are in a better place. I have to believe that I will meet them there eventually.

And the reason I have to believe these things is this:
I spent some time in the land of bitter and resentful ~ and it almost killed me.

Today~ I TRY to always choose hope. I TRY to believe that I am exactly where I am supposed to be. I may not always understand *why* I have to be here~ but I can choose my attitude about the situation. It is no coincidence that the people in my life that I need the most are here when I need them. It is no coincidence that when I need love and strength the most~ I find it. It is no coincidence that losing my son gave me the strength to fight for and save the life of my daughter.

Six years ago today when my Son died~ it was almost my undoing~ I lost my way~ I lost the faith that things would ever be better~ I lost the hope that I would be able to survive with my wits intact.

Today~ though I wonder what he would look like? would he have his father's blue eyes? would he like to play baseball like his big brother? would he be tall like his brother or tiny like his sister? what would his voice sound like? though I wonder these things and a thousand others.......though I grieve his loss still......though there is a part of me that will never be whole until I am reunited with him......though my love for him grows every day and my longing to hold him makes it hard to breathe sometimes........

I look into the eyes of his baby sister Faith~ and I cannot imagine my life without her. I look into the eyes of my grown daughters and of my only living son~ and I see William there~ I see him~ alive and well and whole.

I remember him and I celebrate what he means to me. And in honor of his life and his legacy I do my very, very best to always choose HOPE. Every. Single. Day.

Happy Birthday my dear son.  Thank you for helping me to become a better mother and a better person. Thank you for restoring my Faith and my Hope. I love you.

and to Kelly~ thank you for always believing in me and encouraging me to share my story even when it hurts.

Love and Light,
~ the Ginger herself, mother of 5, learning every day,

Wednesday, May 22, 2013

It's All About Perspective

Okay~ so we will get back to Part 18 in The Story of A Boy......but as I am wont to do ~I have gotten distracted and I need to get some other stuff out of my please bear with me.

It's ALL About Perspective

May 22, 2013

This thought began begging an audience on Sunday. As is usually the case~ I get sidetracked and the best of my intentions go by the wayside. My mama (gods rest her soul) used to say "the road to hell is paved with good intentions" here we are at Wednesday already.....and mother nature has reigned her terror down on the good folks of Oklahoma. So this blog post has changed focus ~ all the while with an acute awareness of the eye of the storm~ at least 12 times.

I have recently had the rare privilege of having a member of my born in, biological family come to visit me for a reason other than a wedding or a funeral.......AND it went very, very well. Much better than I had even allowed myself to hope for. On Sunday this woman, who as a child I wished WAS my mother, decided to return home. And it hit me like a ton of bricks how much I was going to miss her when she was gone. You know that 'you can't think about it more than 2 seconds without collapsing into a puddle of tears' feeling? Yeah. That.

Staring at myself in the mirror I realized I was *very* jealous that she was going to return home to her own daughter. I felt like a little kid~ stomping my foot whining "I don't want you to leave".

I have often mentioned that I have very few **happy** childhood memories. In fact at one point I seriously considered writing a book~ so strange and uniquely tragic was my life....or so I thought.

And then as I grew up and ventured into the big bad world at the ripe old age of 14........and I suffered quite a few more tragedies along the way... my perspective began to change. Anyone who knows anything at all about my life knows that it has not been what one would refer to as an easy life. And I think *most* folks would agree that what happened to me as a child and as a young woman was, in fact, difficult to endure and in some cases tragic.

However~ I have learned that my mother was wise beyond her years (gods rest her soul) when she would preach to us about 'no matter how bad you have it, someone has it worse...... no matter how good you have it, someone has it better'. As I have grown, loved, lost, married, welcomed children into my home, divorced, married again, attended the funerals of relatives with alarming regularity and sunk so low into a depression I literally felt like I was drowning.....I have realized the wisdom of my mother's words. And the life lessons she was talking about have been demonstrated to me over and over and over again.

Each and every single time I allow myself to think that I have cornered the market on tragedy and loss~ it has been shown to me that although it is uniquely human phenomenon it is NOT unique to ME. Although MY reality is what **I** perceive it to be~ it is also true that every other human has their own reality the way **they** perceive it to be.

So back to the visiting relative~~ many times over the course of the 11 days that she was here we found ourselves talking for hours on end. Talking and laughing. Talking and crying. Talking and happy. Talking and sad. Many times over the course of the 11 days we discussed how various members of my born in family 'have it way worse' than I do. But that comparison is a slippery slope.....and I have always tried to pride myself in my desire to NOT engage in the "Pain Olympics" with other folks.

I truly believe that reality is unique to the person who is living it. I cannot possibly ever fully know what another human being is feeling. I cannot compare *my* pain to *their* pain. Well~ let me rephrase that: I ****should not**** even try to compare my pain to theirs if the reason for the comparison is to determine "who had/has it worse". And every damn time I try to do THAT it ends very badly. Every. Single. Time.

So~ with the newest world tragedies weighing heavily on my mind~ I will attempt to share with you how I am choosing (or at least trying very, very hard to CHOOSE) an attitude of gratitude. Not for the sake of proving I have it worse (and MOST definitely NOT to rub what I have in other's faces)~ but for the sake of the knowledge that even when I have it (what I consider briefly to be) bad~ someone ELSE has it far worse.....

I can choose to see the glass as half empty or I can fill that bitch up the REST of the way with a little gratitude.

It is with that knowledge that I make the following observations:

**My wee Ginger family is by far not the richest of the people I know personally
                BUT we are also by far NOT the poorest.
                Here's to middle class~ which overall is WAY richer than I ever thought I'd be.

**My adult daughters and I do not have the perfectly fabulous relationship, meeting all of the ridiculous criteria I so foolishly set for years
               BUT we **have** a better relationship that we did a year ago.....and even when we struggle in our relationships I never doubt for a moment their love for me.
               Here's to new definitions of what a good mother/daughter relationship is...and to the hope that together we will keep learning and growing.

**I have no job
               BUT I have a husband who DOES and I have unemployment coming in.
               Here's to feeling grateful for all of the glorious things I have been able to do with my time since being unemployed...... like being able to volunteer at my kids school,  being able to go swimming and take an afternoon nap,  not being too tired after working all day~ so that when my kids want to play a game I can almost always say YES.....and a whole host of other things I could not do when I worked 50 hours a week.

**My car has been laid up in the garage for almost 6 weeks....and it has caused some pretty frustrating transportation scenarios
              BUT I am so very fortunate that we are a two car family and I still have a means of transportation.
              Here's to being grateful I am not walking or taking the city bus everywhere I need to go.

**My husband almost never has the same day to day priorities as I do
              BUT he is hardworking, loving, an amazing father and husband AND  we, his family, are always a top priority for him.
              Here's to the grace and learned patience that comes with not always getting my way.

**My mother died when I was 14 and my father when I was 19. The pain of doing most of my "growing up" without the guidance of a good parental role model is very real
             BUT I am very fortunate indeed to have had MANY good role models and I have never been without the love of someone.
             Here's to appreciating that I had parents who despite their faults and early deaths LOVED me and to the gratitude I have for always having someone in my life who believes in me.

**For nearly10 years I experienced the very real pain of wanting a child with a man who wants one and not being able to and it hurt so badly that it almost ruined our marriage
             BUT thorough the miracle and black magic of modern medicine~ we HAVE been able to have 3 beautiful and amazing children together.
             Here's to focusing on and appreciating the children I have. Here's to being acutely aware that there are many women who *never* get to fulfill their dream of being a mother.

**I have experienced the very real tragedy of having a child of mine die.
             BUT he taught me as much about mothering and life as any of my living children AND I HAVE living children.
              Here's to surviving what some women don' the profound connection I have been able to make with others who have also lost a child....and to being able to appreciate my children more than I ever could have imagined.

**I have some very real and very painful medical and emotional conditions
             BUT I am fortunate to have decent healthcare and access to medications and procedures that treat and help my various conditions.
             Here's to focusing on what I *can* do rather than what I *cannot*.

**The house we live in is small and we may outgrow it very soon
             BUT ~ even the fact that I HAVE a house ~ with MY name on the deed is miraculous to be sure.
             Here's to remembering what it was like to be homeless.....and to the profound gratitude that no matter how small the house I live in today~ it is ALWAYS filled with love.

**I have recently had the painful experience of having people I *genuinely* thought were my friends reveal themselves to be selfish assholes and users of people.
             BUT I do HAVE genuine friends. I am most fortunate to have many people who truly love me and I know are there for me when I need them.
              Here's to the knowledge that it can be really healthy to find out who your true friends knowing that I HAVE true friends and the security that comes from knowing that when I need them~ they are there~ always.

**It has been in the high 80's where I live for almost a week now. The heat really fucks with my health and comfort.
            BUT the 'severity' of the weather here is in no human way comparable to the severity and devastation of the weather in many other parts of the country RIGHT NOW.
           Here's to sucking it UP and getting over myself and my "discomfort" with the very painful knowledge that so many families have lost homes, lives, children and life as they know it will never be the same.

So there you have it my friends. With a profound sense of true G*R*A*T*I*T*U*D*E I will go about this week...trying to be the best possible version of myself....making amends when I am wrong.... sending love, light and hope to those suffering so badly.

Peace to you and yours,

Monday, May 13, 2013

The Story of A Boy and his brand new baby Sister: Part 17: Welcome to the NICU

If you have found your way to this chapter I hope that you have first found your way to parts was a very long journey to get to that cold April night in the OR.

Thank you for reading, for your kind and gentle comments and for sharing in the hope and legacy of my dear Son William.

27 April 2008

in the wee hours of the morning.....

I remember waking up feeling like I was having an out of body experience. It was similar to the experience of going under~ only in reverse. At first the voices sounded very far away.....and I wasn't sure if someone was holding my hand....and my legs felt odd and heavy.

Slowly but surely I returned to consciousness......and my husband was holding my hand....and my legs were still numb. The curt and efficient doctor was standing at my bedside talking to my husband. And I could hear what she was saying but it still felt sort of dreamlike. She was talking about the reason my water broke....and I was all wait, what the what? We know why? I shook my head several times to try to clear the cobwebs of anesthesia from my brain. She told my husband that I wasn't out of the woods yet. She said I'd have to stay over on the labor side so they could keep a close eye on me. She told my husband we would talk more when she rounded in the morning. I remember thinking: well thank the gods for that, since I really have NO IDEA what she just said.

I looked over to see my husband looking more tired and more worried than I had ever seen him. It was like he had aged 10 years in the hours I was in the OR. I told him that he should go home and get some rest and he promised that he would~ but said we were waiting for the neonatologist to come over and talk to us.

Now I am not the most patient of women by nature.....and I was immediately filled with dread but felt an extreme sense of urgency for the neonatologist to come: RIGHT NOW. Now my husband IS the most patient of men by nature and he reassured me that they had been waiting for me to wake up and that he had asked the dr to wait and talk to us both at the same time. It was then that I learned that after the incubator and my husband had been whisked from the OR I was in surgery for nearly 2 more hours. And then I was crying and apologizing and I felt like a big jackass because he had been waiting all that time~ not knowing the medical condition of his wife or his daughter.

He was calm and reassuring, he wiped my tears and held my hand. I looked at him and I knew there was resolve and desperation on my face and in my voice. But I felt compelled to say: No matter how this turns out, I can NOT do this again....there is no way that I could survive *this* again. He said: I know honey, you told me that in the OR. Funny, I didn't remember saying it to him in the OR. And at this point I still had no clue as to just HOW true my words were.

And so we waited. And the nurse who never seemed to leave my bedside was **constantly** mashing on my stomach, checking my blood pressure and checking the amount of bleeding I was having. It was actually rather irritating and I really wanted her to stop~ but at the same time knew that she could not.

Then in trudged the neonatologist and a NICU nurse. I could tell immediately that the news was grave. The doctor had a very thick accent. I remember struggling to understand what he was saying and most of my questions were answered with sighs and him repeating the words he had just said only slower.

So this is the news that fellow and the nurse brought to my bedside that night: Our daughter was alive, despite great odds that she was not expected to live in utero for 4 weeks without any measurable amniotic fluid and the fact that she almost did not survive the delivery. They had successfully intubated her and she was on a ventilator. They had gotten IVs started and already given her what seemed to me like lots of medications. The biggest problem (and largest indicator of her eventual survivability) were her VASTLY premature lungs. He went on to explain that one of the main functions amniotic fluid was to help with fetal lung maturation ~~paying no mind to the fact that we had been listening to that song and dance for 4 weeks now: starting with good ole Dr. Fuckface in the world renowned hospital in Pittsburgh what felt like half a lifetime ago. He ended his tale of woe by listing all of the things our daughter might face in the next 24-48 hours....brain hemorrhaging being the most deadly. I asked when we could see her (I mean THAT'S a *normal* question RIGHT?) He looked at me as if I had three heads. He said they would let my husband in to see her for a moment and he could bring me back a picture. I would not be able to physically see her until I was stable enough to be transported via wheelchair.

And with that he and the nurse left the room and said that he would talk to us in the morning. WTH is with all of this "we'll talk more in the morning" bullshit? Incidentally: THAT doctor and THAT nurse became my  two *least* favorite staff members of the NICU. But having absolutely ZERO control over the situation~~ my husband and I chose to try to focus on the positives: she *had* survived delivery, she *was* successfully intubated, she *had already* received medications meant to save her life and also reduce her risks of long term catastrophic health issues.

My husband was ushered to the NICU where it was explained to him that he would need to 'scrub up' and put on a gown and a mask each and every time he wanted to enter the NICU. And they taught him how to do those things. Just after 2 in the morning he returned to my bedside with a picture of the tiniest living baby I had ever seen. She was perfect in every single way: just really, really, really small. To demonstrate the point further my husband had been given a teeny tiny diaper to show me. And he said it was the smallest preemie diapers that were made and it was HUGE on her little body.

I clutched that photo and that teeny tiny diaper like my life depended on it. She looked so very frail, her skin still almost transparent. Her left leg was twisted at an odd angle~ my husband said that the staff had told him that this was a result of her being essentially "stuck" in the same position for four long weeks. And they did not know if it would resolve or be a permanent disfigurement....and truthfully that was the *least* of our worries.

And so it was then that my husband went home to rest and to snuggle our dear living son at home enough for the both of us.

And there in the labor room I stared at the first picture of my miracle daughter until I had memorized each and every single one of her teeny tiny features. It occurred to me that she very strongly resembled my husband and both of my sons....and that thought made me smile.

Throughout that long night I would awaken many times and clutch the photo anew. And each time I would ask the nurse who never seemed to leave my bedside if there had been any word from the NICU. Each time she would say "no" and tell me to rest. And I would clutch the photo and drift off again. Praying, praying, praying to the gods, to William, to the universe ........a prayer now said aloud literally thousands of times in the last 4 weeks:

Please let my daughter survive and please let her be healthy.

Thursday, May 2, 2013

The Story of a Boy and His Sister Part 16: The Delivery; ready or not here she comes

This is the 16th in the series....hopefully if you are here you have found your way to parts 1 thru 15.

Thank you for sharing the journey and the hope.

26 April 2008

24 weeks 3 days

Saturday came..... and I felt crampy...and during my 5 minute shower I had the first 'bring me to my knees' contraction. I timed the contractions for a bit....and then when they were about 3 minutes apart I told the nurse. Well at first they were very doubting "we are not picking up any contractions on the monitor". WELL DUH I have no amniotic fluid and the baby is tiny. And I don't care what your damn machine says~ I'm telling ya lady~ this is my FIFTH go round here~ I KNOW a contraction when I feel it DAMN IT!

Annnndddd then I was bustled over to the labor unit~ where the babies are born.

And there was a nurse who picked up both the contractions and my daughter's heartbeat. And the contractions were indeed about 2 minutes apart now. And the most efficient and curt member of my five doctor team was on call. We would learn later that she has the reputation for being an excellent surgeon~ and I'd have to say I agree.

From the doorway of the big spacious delivery room~ after listening to my daughter's heart rate through several contractions: she looked me straight in the face and said: "you have done all you can....I think we need to call it here. She has to be delivered". And I quietly agreed. And she checked me and I was dilated to 6 centimeters (take THAT doubting nurses!). My self affirming moment was just that: a moment.

And then all of the sudden things began happening faster than I could keep up with. The baby's heart rate dropped dramatically with each contraction...... and with each contraction her heart rate was slower to recover. That one nurse and that one doctor stood next to my bed~~~ and they exchanged a look that was NOT good. And the efficient and curt doctor said: I don't think she will survive through many more contractions. How far are you willing to go with this?"

calmly and collectively
I said
with MORE resolve than I had ever had before or have ever had since
I said:
And she said that even still~ the baby may not live. And did I want to risk surgery knowing that?
And I said: yes
And she began listing possible complications and risks for me.
And I said: I do not care.
And she held my hand and she said: I know but I have to tell you anyway.
And I said: I understand.

And consents were signed and orders given and a deluge of nurses descended upon me....and I was prepped for surgery...tubes and catheters were epidural was inserted....and I prayed and I prayed and I prayed and all the while that one nurse held the monitor and I could hear my daughter's heart beat.

In the middle of this chaos they asked my husband to leave the room~ and I don't know if my friend just happened to call him at that moment~~ or if he had begun making calls. But before I knew it I heard her voice outside of the delivery room~ asking to see me. And I said "please let her in" and they did. I do not think that it coincidence that she came. We prayed. She held my hand~ she said she believed that everything was going to be ok. And she helped me to believe it too. She just so happened to have her camera in her purse and had the foresight to give it to my husband.

It seemed like 30 seconds but surely it was longer than that~ and I was in the cold, sterile room of the OR staring up at the ceiling. The anesthesiologist explained that he would at least try to keep me awake until they got the baby out~ but he could not promise. And I knew that he was thinking if I did not see her in the OR, I may never see her alive. The fact that they let my husband come in gave me hope. And then we waited....the efficient and curt doctor said that she wanted the neonatologist to be present for the delivery~ said that it would be the best chance ~ so the epidural was turned up and the contractions stopped...and I could hear the steady and rhythmic beat of her heart. And I prayed.

In these sorts of situations I am not sure if it is good to have first hand knowledge of what was happening on the other side of the big blue sheet....or if it brought me more worry.

In any case~ I did know....and as soon as the neonatologist arrived they delivered my daughter into the world....their was no reassuring indication accept for the doctor telling the nurse the time of delivery and the nurse repeating the time back to her. When my husband stood up to try to see her he was quickly commanded to sit back down.

I did not know where my daughter had been taken~ but then my husband said that he could see that they were working on her in a small room adjacent to the OR....all he could see were the backs of the nurses and doctors......nothing to give hint as to what was happening.

And on the other side of the big blue sheet I could hear that things were not going well. Calm voices asking for instruments became strong commands demanding action. I could hear the tell tale signs: we need more sponges, clamp here, cautery, DAMN IT cautery, get me the Hemabate NOW. And there in the OR on a cold April night it was surreal to realize that both mine and my daughter's lives hung in the balance....and I could tell that the anesthesiologist had given me more sedation~ I wanted to say : NO, NOT YET.....but I was unable.

And then as if in slow motion the HUGE incubator holding our very tiny and LIVING daughter was wheeled up to my face. My husband~ openly sobbing now said: she is SO much bigger than William, my God she is beautiful. And just that fast the incubator was whisked away and so was my husband.

Very sleepy now~ hearing voices as if they were very far away.

The efficient and curt doctor said to the doctor who was assisting~ who's name I did not even know~  in a clipped and self assured way "I know damn it, but I am trying to save her uterus too".

And I remember thinking 2 things:
1. while it was refreshing that the efficient and curt doctor was human and used the swears when frustrated: it was alarming that she WAS frustrated.
2. I did not give a flying fuck if she saved my uterus or not~ or even if she saved me. I just wanted to scream that it did not matter.

My very last thought before going under was:
please do not worry about me or my uterus.....please dear god...please just go and save my baby.

And meanwhile in a NICU not so far away a team (a LITERAL TEAM) of doctors, nurses and technicians using all of the tools and medications available at the time~ worked feverishly to save one very tiny baby girl~
with dark hair and green eyes
weighing in at a whopping 1 pound and 6.7 ounces
measuring 11.75 inches
this miracle child of ours~ that science had helped us make and Hope had helped us keep
having gone 4 full weeks exactly without any measurable amniotic fluid

was our very own Wee Tiny Princess and her name is Faith

The Story of a Boy and his Sister Part 15~ Love, Hope and Faith

This is part 15 of The Story of a Boy and his Sister~ Love, Hope and Faith

If you've been with me a while you know that this is a difficult story to write and to read. If you are new to the story ~~ thank you for joining me on the journey.....the story means more and will make more sense if you read it from the beginning (parts 1-14).

Thank you for sharing the journey....thank you for sharing the hope.

high ho high ho it's off to the hospital I go....

4 April 2008

21 weeks 2 days

I was admitted~~ it WAS a long haul. I prayed. Gods I prayed. I didn't really know to whom I was praying even~ and it didn't matter~ I had hope. I clutched those petri dishes last thing I did at night~ and prayed for strength~ prayed for William to help me and his sister ~ for I knew we could not do it alone~ I placed them under my pillow in the hopes that even my dreams would be hopeful. I removed them every morning ~ and prayed some more. I called on every single one of the gods I had ever known~ I prayed to the universe really~ and the prayer was always the same "please let my daughter survive. please let her be healthy".

There were hard times~ life goes on even when you are on hospital bed rest and can only be out of bed to pee and to take a 5 minute YES FIVE MINUTE shower. Imma tell you I learned really quickly how to wash my hair and shave my legs in less than 5 minutes. And lord knows that'll probably be a useful skill someday.

Once a shift a nurse would come in and check for "fetal heart tones"........sometimes there would be moments of panic when it took the nurse a long time to find my daughter's heartbeat....but EVERY. SINGLE. TIME. It was there.

The weekly ultrasounds were really hard (and have I mentioned that I have 50 or so ultrasound pictures of this child?). The ultrasound tech was different every time~ so every time I had to tell the story again....and every time; I mean every single f'ing TIME;  the technician would look at me with pity and sadness and say "there is no measurable amniotic fluid"~ and I worried~ and I prayed~ and I really tried not to let doubt sneak in~  but some days it did. Some days there were nurses who thought it was 'useless' to check for her heartbeat once every 8 hours~ ~~once they tried to transfer me over to a SHARED room with a SHARED bathroom with a woman who was miscarrying.....HELLO INFECTION CONTROL HERE! But each time I felt that things were not being done in the best interest of my child and me~ I had the strength and the tenacity to question WHY? I was in that shared room less than 4 hours before I was transferred back to a private room.

And every single day the flower of hope grew larger.

And pretty soon I knew all of the nurses (and had my favorites). I read, I watched more TV than I ever had in my LIFE <<sidebar~ Facebook would have been really useful then~ but if it was available~ I sure as hell didn't know about it>>. There were days of constant visitors and there were days that I saw only the hospital staff. It was excruciatingly hard for me every time my dear husband would bring our nearly 2 1/2 year old son in. There were days when he was rambunctious and could not WAIT to leave the hospital~~~ and the were days that he would stomp his little toddler feet and absolutely REFUSE to leave. Let me tell you~ it broke my heart every time he was carried down the hall screaming in his toddler tantrum "NO, I STAY WITH MOMMY".

But each day brought more hope. Yes the neonatologists came in and warned of all of the possible horrific side effects. Yes there were 5 doctors in the practice that rotated seeing me once a day~ and some were more nurturing and some were very frank and harsh......but there I sign of labor, no sign of infection, NOT A SINGLE MEASURABLE DROP OF  amniotic fluid.

Wednesday 23 April 2008
24 weeks 0 days

VIABILITY DAY!!!!!!!!! We are officially TWENTY FOUR WEEKS ALONG! take THAT Dr. Fuckface! OOOHHHHHH MAN! This felt like a REALLY big day! 

But only for me~~ turns out that the doctor's and nurse's caring for us really did not change their attitude or prediction of the outcome. If ANYTHING they became more guarded. They all felt the need to WARN me.......just because you've made it this far doesn't mean she will live....she's had no amniotic fluid for nearly a month....she's been stuck in the same position for nearly a month~ contractures, brain bleeds, deafness, blindness, heart problems, lungs not mature....and on and on and on and on~ until my head would spin and I would quietly ask them to leave.

Because in my head I carried calm.
And in my heart I carried William.
And in my very soul I carried Hope.

24 weeks 0 days = betamethasone  shot to help with lung maturation.
24weeks 2 days = second shot of betamethasone......oh man we are on a roll here!

and then.....this particular ride was over.....

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.