Friday, June 17, 2016

I wanted a BIG BELLY and a lot of other things.......

Ok so I have decided to step away from the actual timeline for a post to insert thoughts I have been having lately.... or really since she was born.

I figure if I really talk about them... they might go away.  But even if they don't, at least I have looked them directly in the face and called them out by name.... so maybe it will get easier over time.  Somewhat like if you see a strange person in a parking lot near your car you should look them in the eye so they know you know they are there..... they leave many times. 

There are many things you "miss out" on when you give birth to your child at 24 weeks.  I had another 4 months to go, and most of the exciting and fun things you get to do as a pregnant woman.. especially your first... happen during those months.

I had a wonderful photographer booked to do my maternity photos and birthing photos.  I doubt she will mind me mentioning her name... Stephanie Murphree!   I had plans to get my belly painted like so many do.  I was planning on having a hockey rink painted on it with babies in NY Rangers and Dallas Stars colors playing.

I never got to have the baby shower where you are surrounded by all of the people you love admiring your HUGE about to burst belly..... though we had a lovely shower after the fact with all those same loving people. So I won't by ANY means down play that.  It was a beautiful shower thrown by my lovely Cousin Cathy and her Best Friend Lisa, my Mom and Sis.



But still.... I had always imagined having our daughter WITH us (meaning inside my belly).... rather than in the NICU.

I never got to have maternity photos like most do and the few photos I have of me pregnant with Eden were all off of an Iphone... though I am grateful to have any.

Greg took us on a BABYMOON in Corpus Christi. It was lovely in every way.  

 I can say I did get to perform WITH my daughter before she was born.  She traveled to a few gigs with me and was a great performance partner. 

I did get to go to a Ranger Game while pregnant.  That is NOT a milestone  I would ever recommend to anyone no matter how early along you are in your pregnancy. But I did have what I think is most adorable belly pic.  At least I have that. 


 Best possible escort too.

                                      Pretty darn good seat too where I could put my feet up.  

But all in all those pics represent as big as my belly ever got.  

I also never got to feel her move from the outside or visually see her move.
However she did move when I sang in San Francisco... she danced a bit.  At least I had that. A feeling I will never forget.  

I could not wait to play music through headphones to her of all kinds of music..... but I was waiting until she pooched a bit more.  

I realize this is sounding perhaps a bit WHINY.  Maybe it is.  But they are real feelings I have had and still have from time to time.  Denying they exist only proves to fuel the fire of those negative emotions.  

The guilt is so powerful of not having been able to provide the proper home for her to finish growing and at the same time of not fully getting to experience growing my little girl inside me. 

Am I GRATEFUL for my daughter?  ABSOLUTELY
Am I GRATEFUL to be alive?  YEP
Am I GRATEFUL Eden is doing so well?  NO QUESTION.

But in so many ways I feel robbed. 

Breast feeding was not an option for a 1 pound baby and the fact that my milk supply BARELY came in and only lasted for a few months of pumping my gals until they were dry. I sat that there at 3 am as my nipples were being pulled and squeezed only to retrieve a few mls. 

  I wanted to bond with her that way.  Yeah, Yeah I did what I could.... I know. 

Truth is while I was pumping those three months... I knew what I was doing was GOOD and RIGHT for my baby.  However, I was exhausted... still recovering from a serious illness, still hormonal, and I HATED every time I had to do it.  I felt HORRIBLE about feeling that way. 

There really isn't a graceful way to experience it all.  You just have to.  Or you crumble. It's a MESS.  All of it.  But you have to.   I HAD TO.

I never got to look into her eyes when she was born.  How could I?  They were fused shut. 
And while certain HUGE moments are very clear in my mind like the first time I held her and how she felt... I can't even remember the first time I looked into her eyes.  

The truth is that writing this is helping me deal with a large ocean of sorrow, disappointment, anger, anxiety, night terrors and more.  Survival mode is just that... for survival.   But life isn't just about survival.  I want to do more than just breathe and eat.  I want to re experience life through my daughter's eyes and show her the world with her Daddy by our side.  

Lately I have felt completely STUCK emotionally.  Afraid to move forward, afraid to remember and disappointed in myself because I know I am better than this.  

So I am slowly coming to terms with the special circumstances in which our daughter entered this world.   I told my Aunt the other night that  I was given a glimpse of my soul last week in a vision and it was so full of anxiety and turmoil..... true there is SO much love and gratefulness there but  I knew I had to face and admit all of it in order to cool the Volcano.

It IS working.  

And it will eventually be ok with me... all of this.... as long as we get to have moments like THIS:

Did I mention she has the BEST possible Father in Greg?   
And I have the BEST Husband and BEST Friend. 
                      And we have GOD.

 And God gave US all of YOU who have prayed and supported us.  

Wednesday, June 15, 2016

Sputter, stop, go, stop, GO HOME!

Today was the day...... having successfully passed gas and since then keeping a steady flow........I suddenly felt the....."the urge."    I could not believe it!  I thought I was going to have to go home and suffer for a few more days before we saw any real movement.... literally.

But was going to be different.  I had that almighty tingle...that feeling that paints an immediate "deer in headlights" look across the millions of faces of unsuspecting people throughout history.  It was inevitable.  It was barreling down the tracks doing downhill with no possible way to stop.... YES.....  Oh wait!!!!  

I'm still sitting on the edge of the bed reveling in the future relief!!!!!  It takes me a whole minute or two just to get up and slowly shuffle my broken body across the floor to the bathroom and much less the 30 second sitting process!!!!  I'm not going to make it!!!!

But I had to try.  "I think I can, I think I can!"

Look up and keep looking up to avoid the most excruciating and ripping feeling in my stomach!  Stand up while looking UP!  Just do it!    Done.

Now shuffle those feet one inch at a time! A forward moonwalk of sorts is the prescription for this moment.  Fast, but smooth!

Every step is painful and promising.  I arrive... now to sit!  Look up!  Look up!!!!  Done.

And you guessed it... the very second my cheeks met the porcelain was like a signal to my body cease fire.  All movement stopped.   It was like the Titanic just after they initially hit the berg.... ALL...... STOP......... Wait and see.

Tic tock.  Wait.  Tick tock.  Wait.

Cut to 45 minutes later and frankly I'll just spare you the details aside from telling you that I was sure I would need reconstructive surgery after that one.  

Either way.... It was done.  I waddled my way back to my bed to rest.  I was told I had a few hours before being released.  Greg and my Mom were packing things up and so I rested.  

Greg did take me downstairs earlier that day for the first time to have a light lunch and begin to feel human again before going home.  It was lovely to  join the world after 10 days.  

This was the first pic of me outside my room that was not a NICU trip. Greg wheeled me around a bit.  He was my chariot champion. 

It was just about time to go.  I felt I needed to go tinkle before we headed.  
So I sat down to anoint the throne and immediately I knew something wasn't right. 
I truly felt like I had just had another baby, but this time through the natural route.  Cramps were intense and when I looked down into the water....... a GIANT blood clot lay there.  

Really?   Am I now going to die of a blood clot or bleed out right before I go home?  Again with the fear!!!  I was angry.  We called the nurse and they made me get back in bed.  They said I should lay there for an hour and see if anything else happens.  If nothing else happened I was free to go.  

Yet another test.  That hour was again the longest hour ever.  We watched TV but I could not even enjoy that.  All I could think of was I was going home and now I wasn't.  

My family was encouraging and loving as they had always been.  

Fast forward an hour..... I was good to go.
Papers signed.
My butt in the wheelchair.
Greg pushing me. 
We paid one more visit that day to our precious miracle as this would be the first time Mommy had left her at the hospital.  I was ready to be home.... but it would not truly be home for either of us until our family was complete under that roof.  So thus began a long and grueling 170 days or just under 6 months of NICU life.  

Monday, June 13, 2016

Goals: BP down, Swelling down, pain management, FART

The next 3 days in the hospital my BP went through the spike and begin to lower again.  It seems my nurse was right about day 3 and 4 and how the body has a resurgence after delivery on those days many times.  My legs were still swollen but I did notice the swelling in the rest of my body begin subside.  

Frankly by this time I was SICK of the hospital menu options and wanted REAL food.  I still had my daily incision PUSH which I still could not get used to and yes as I am writing this again I still "feel" it in my mind.  Currently on a blood thinner to protect my body from clots from the surgery, two BP meds, fluids, tylenol 2 and.......finally........ the all blessed STOOL softener.  

Let's just get real here.   I haven't had any kind of "progress" since she was born.  6 days people!  Yes, Yes I could pee.  Seriously though.... I couldn't even make the all natural symphony that God gifted us all with..... nope.... no butt trumpet I tell you!  

My nurse came in daily and asked "Have have you experienced flatulence today?"  My sister will understand why I almost peed my pants giggling in side every time they asked this way.  Of course they are mature medical professionals and here I am a 40 year old CHILD who can't handle a mature conversation about my own farts!  Sadly each time they asked I had to answer no.  Nothing was moving folks! 

I was informed that in order to be released I would be required to pass gas.  I asked "What about poop?  Don't we need to make sure that is still working too?"  They said "No, the only requirement is passing gas because eventually the other will follow."

Made sense... Farting would be like warning that things are moving!  But I couldn't!  So I began to worry that I was permanently damaged and that I was not going to be able to..... you know...... FART!!!!   How would life be without this feature? 



I felt like every time a nurse would walk in..... and it became more and more frequent...... I was being judged.  They would ask the medical version of the question and I would hear " you fart yet?"   Do you know how humiliating it is to be asked this?    They were always very kind and had all taken such amazing care of me so I naturally wanted to please them........... by farting.   

Nurse enters again...." can you pass gas?"
I got so tired of being asked I said "hold on a sec".. lifted my left cheek and made an effort right then and there to let her know I was trying!!!  NADA:   And the judges panel result was:

3 hours later.... Effort was made..... and....

Then,...about 9 pm that evening I was slowly doing my process of getting up off the bed to go to the bathroom....when suddenly....the sound of FREEDOM exited my body!  And NO ONE was there!!!!!!!!!  NO ONE!!!!!!!!!!   But the judges in my mind reacted thus:

I was OK!!!!!  My insides were working!!!!  Thank the maker!!!!!
2 minutes later a nurse walked in and I immediately blurted out "I FARTED!!!!!"   To which her response was hysterical laughter!!   
I was informed as long as my BP stayed below a certain place that I could be released the next day probably by the end of the day and that I should start on a new goal..... POOP. 


Wednesday, June 8, 2016

The Dark Day- Day 3

Having made it through 48 hours of attempted sleep,  BP monitoring, more bloodwork, incision pressing, pumping every 3 hours and watching Eden on the Angel camera try to breath, grow and make it though each consecutive hour (every hour and every day meant greater chances)...that morning or evening... I can't remember honestly because I lost time A LOT.  My Mom wheeled me down to the NICU only to encounter a different doctor than I had known that last few days.  The truth is she was highly critical simply because of her gestation.... but her doctor I had been communicating with over the phone the last 2 days had a gift for giving the truth, but with encouragement and hope.  This days doctor met me at her bedside and gave me her rundown..... "she's up on her oxygen needs...she's working a bit harder.... we have changed settings to work around it.....but you need to realize there is only so much we can do."   

I am sitting in this wheelchair... incision throbbing, head throbbing, 4 feet from my baby girl who I came to see.... and this doctor stands in front of my path and delivers these words.  The truth is I know they were not trying to be cruel by any means.... they have to tell the truth. But somehow this particular doctor did not quite have the skills to step out of their Doctor mode and turn on the human side a bit.  My Mom is almost in tears massaging my back trying to comfort me.  When we looked at her I will be honest.....I wondered how this would ever work.  When you see your child's chest being beat up and down by a special ventilator several hundred times a minute and their eyes are still fused and you can see through their skin and their diaper is the size of a small maxi pad and their BP cuff can fit around your pinky and there isn't a hat small enough for her.... the weight of reality starts to drop from the sky like pigeon droppings and splat right on your face. 

So after a short while of watching my daughter try to survive Mom wheeled me slowly out of the NICU to head back up to my room.  The headache was profound.   My feet were swelling, my body hurt... I was not doing well.  I took the standard 5-10 minutes it took to get into bed because of having to be so precise about my movements.  The nurse came in immediately and took my BP.   It was UP.... AGAIN.  180/95 or around there.  I remember the dread and doom I felt upon seeing those numbers.  Delivery was supposed to DELIVER ME!  

They said it was the only cure and usually the result of the BP lowering is quite fast... and it was.  But today those numbers I had kicked to the dusty road behind me did a screeching halt with dust flying everywhere ...did a u-turn and made their way right back into my body.  I though I had left them behind!  Why were they back?

The nurses on that floor were SO good to me.  I remember their empathy clearly.  I was in a dark place in my spirit.  I had heard stories of women giving birth from preeclampsia/eclampsia  and they were fine.  Then days or even weeks later they suddenly died of a raging BP attack from the disorder. 
The thoughts of this scenario embedded itself like termites of FEAR.  My room was dark ( I couldn't handle the lights), my heart was aching, my mind was a tornado of terror.  

What if I left Eden with no Mommy?
What if I left the man of my dreams who knows me better than anyone?
What if I left my Mom and Dad.... the pain they would go through?
What if I left my sister?  How would she ever reconcile that?
What if God decided it was my time and I was not ready?
What had I not accomplished?
I had been stuck in a particular place in my career due to my personal life and what if I never got beyond it?  
After ALL this..... now God?  Really?  Now of ALL times?????  I 
I even turned away all visitors but Greg and my immediate family.  I wanted to be alone. 

I was ANGRY and deeply SAD. 

If you know me you know I generally put on the strong face and say all is OK.  

I could not do that.  When the nurse came in and took my BP it was still hanging fairly high even after more meds.  I lost it.  I asked her point blank "Am I going to die?  I'm so scared I made it through the big crisis only to not make it a few days later."  She smiled with her compassionate eyes and face and said " No honey, you are not going to die.... this is very very common after a severe case as yours.  Day one and two are usually very good recovery days and then the body does a bit of adjusting and still ridding itself of the problem there is usually another raise or temporary spike of BP for a day or two.   We are monitoring you closely and have your meds adjusted and will continue to do so.  We will get you through this.  You need to concentrate on healing and resting for that little girl."  

It was like a light.  She was yet another angel who pierced the darkness with a knife and slid down the dark shroud of fear and sliced it wide open to reveal the light.  Best image I can give you is Goonies.... when sloth slid down the sail with Chunk on his back. Yeah, that's the best image I have for you lololol.

That moment after the darkest 12 hours of my life was a defining moment.  It was a moment when I chose hope over fear.  It was the moment I chose hope because I did not have to fear dying.  Why would God bring us both through all of this so far only to tear us apart?  God loves ME.  God loves HER.  God loves HIM.  We are a family.  We are meant to be together. !!!  These were all realizations I was having. It was like I was having them for the first time but these were things I already knew having been embraced by the love of God early on in life.  

It was a sudden second chance.  
Some may not understand but when your life is threatened and it is a very real threat....your perspective on your purpose and your place in the world is shifted and anything you have ever grounded yourself in becomes soft and shaky for the moment.  It was good to breathe again.  

I had GOD on my side. 
I had my family around me.
I had this wonderful man by my side the whole time.  

The way he loves us is so beautiful.  He's the kind of man that will follow me down into a dark place to pull me back out.  

Sunday, June 5, 2016

The next 48 Hours

So I've seen and touched Eden's little finger all for about 1 minute before I was rolled in my bed to my recovery room.  The next two days while the magnesium wore off, I would only see my 1 lb. miracle through the Angel Eyes Cam.  Thank GOD for this.  She was under the Bili lights so in the camera what I saw was my baby with extremely dark looking skin and the lights were so bright it was quite difficult to really see her.  I could see her outline and the ventilator and the other wires and her tiny arms that would barely move. I could faintly see her tiny chest moving up and down if the lights hit her right.  Basically, I knew she was there... I knew she was alive.  

I tried to watch her cares and wondered whose hand it was that was keeping my baby girl alive.  I was so happy to meet and get to know them later.  I'm guessing this could have her day primary nurse on the left photo....but with the gloves...its hard to tell.  That nurse was PRICELESS to us. 
Greg DID buy me a pink Teddy Bear for comfort.  


My BP had come back to around 145/90 up to 150 ish so it had definitely benefited from delivery, and no more headache or blurriness.  But the first time my doctor came in to press on my uterus to see how the incision was holding together... oh LORD.   She warned me she had to do this numerous times over the next few days to keep testing the integrity of the healing incision.  I can still feel this in my body memory.  It was one or two firm presses right above the outer "c-cut" but right on the internal vertical uterine incision.  The shock took my breath away and from that moment... every time someone came in to do it..... my BP would go up a little.  

Finally after 36 hours they could stop the could have been 24 hours but I felt it was longer.... I don't know... MAG BRAIN.  The heat lamp sensation began to fade and I was feeling a bit clearer in my head.  I don't know how I missed this in my memories because it was NOT fun but it was time for the SECOND time get my catheter out.  No one can ever prepare for you one being put in and one being "yanked" out.  

Just like no one can prepare you for this:

I couldn't resist lol.

 I say this because it does not matter how slow or cautiously they do it.... it still feels like someone is yanking rope with shards of glass attached to it out of your urethra.  YEEEEEEEEEEOOOOOOWWWWWWWWZZZZZZZZAAAAAAAAAAAAAAAAAAAAA!!!!!
I may or may not have stepped out the Kingdom in the moment.. BOTH times and uttered some very colorful metaphors.   Ok... I DID.   I might have said DARN! 

Day 2 I woke to an imaginary elephant sitting on my chest.  I could not get any kind of deep breath.  I was breathing so shallow and it hurt so bad.  The best description was it felt like an elephant had marched in and parked it's big round butt on me.  One of my favorite Respiratory Therapists actually came up with this when I tried to describe how it felt..... she was perfect in her description.  I just KNEW I was getting pneumonia.  Having had it before I thought I was more susceptible and that a natural progression of all that had happened would be that.  I was taken down for a lung x-ray at which point it was discovered...............NOTHING. lol    It is a regular side effect feeling from the Magnesium.  That next 24 hours was awful as the Mag left my body and left me with this.  But my BP was maintaining... still a little high but not dangerous.  This is a perfect picture of how it felt. 

Every hour or so I would check the Angel Cam and see my little Angel fighting for her life.  I was told after a day on the conventional vent she would need to be switched the JET ventilator which breathes hundreds of times a minute for her.  I hated that I couldn't see her yet.  All this and then LACTATION came in.  She was awesome. 

She told me it was time to start squeezing the heck out of my boobs. 

 Mind you, I did not understand why we would even try because how could my body know it was time to make milk....not to mention how sick I was?  Regardless we began to try.  

So... I'm recovering... feeling awful... can't breathe well, finally catheter out and now...another woman I've never met comes in and starts massaging my boobs!  When I tell you that a situation like this will take EVERY ounce of dignity you thought you had....break it down into a million pieces and sell it all piece by piece for a cut rate..... I MEAN IT. 

 She told me to pump every 3 hours and massage them the same.  Can I just say that is easier said than done when you are trying to recover...can't breathe, still watching the BP and... finally getting out of bed to go to the potty?  

In order to get my self out of bed with only Tylenol-2 to back me up..... they warned me how it would hurt.... but the best advice they gave me was to LOOK UP as I was trying to raise myself out of bed and to slowly walk looking up the whole time.  I would desperately need to continue looking up once day 3 hit.  

More on that to come.....I can't face this right now.... truthfully.