Maybe you’d like to step outside?!?

Yes I did say it,

yes I wanted to fight…..

BUT those were NOTthe first words that were said

Let me go back and start at the beginning.

One of my grandson’s was diagnosed with ROP or Retinopathy of Prematurity.  A doctor from Mayo clinic describes it as this:

Retinopathy of prematurity (ROP) is an eye disorder caused by abnormal blood vessel growth in the light sensitive part of the eyes (retina) of premature infants.

ROP generally affects infants born before week 31 of pregnancy and weighing 2.75 pounds (about 1,250 grams) or less at birth. In most cases, ROP resolves without treatment, causing no damage. Advanced ROP, however, can cause permanent vision problems or blindness.

In ROP, blood vessels swell and overgrow in the light-sensitive layer of nerves in the retina at the back of the eye. When the condition is advanced, the abnormal retinal vessels extend into the jellylike substance (vitreous) that fills the center of the eye. Bleeding from these vessels may scar the retina and stress its attachment to the back of the eye, causing partial or complete retinal detachment and potential blindness.

We were informed that because he had to be on oxygen, his risks for it progressing further were HIGH.

Well that’s great….. He needs oxygen to live, but keeping him on oxygen can cause him to go blind?!?!?!?  WTF?!?!

There really was no decision to be made.  He needed to remain on oxygen, steriods and the nebulizer treatments to live.

My daughter was told that she would need to continue to follow up with the pediatric ophthalmologist biweekly to monitor his condition.  ( add that to the list of specialists the boys needed to see weekly, what’s one more doctor?)  OF COURSE she was going too.

The next appointment was January 31, 2019.

If you google record breaking cold for my area you will find the date January 31, 2019

The city hit a new record low at 6:45 a.m. when the temperature hit minus 30, making Thursday the coldest day since the National Weather Service began keeping records in 1905. And then the temperature plunged even lower a little later in the morning, to minus 31 degrees without the windchill factor. (which for the record was -60)

Knowing that the temperature was going to be so low, Thing 1 called the ophthalmologist’s office to reschedule the appointment.  I was sitting across from her at the kitchen table when I heard the person on the other end of the phone say, “YOU DO REALIZE YOUR SON COULD BE GOING BLIND DON’T YOU?!?!?”

Let me pause here for a moment to let you absorb that.  I know I needed to.

OH HELL no she didn’t just say that! 

Thing One gave me the look of “OH GOD….please don’t say anything” as I tried to climb over the table to give that voice a piece of my mind.  The voice continued with , “well you were supposed to come in yesterday and you missed that appointment.”

“Um no we weren’t and no we didn’t.  I am looking at the appointment card in my hand and it says 1/31/19 at 11:20 am.”  This Bitch, yes I said BITCH, wanted to sit there and argue about this.  Did I mention -31 degrees outside?!?!?!?  Most of the city ended up shut down that day.

I couldn’t control my anger so I told Z to go help her while I walked outside.  (yes in the freezing cold I went outside)

When I came back in the appointment had been rescheduled for that Saturday morning and I was going with.

I’m actually getting angry again as I write this and I’m not even close to being done.

When we went to the appointment on Saturday, I recognized her immediately by that voice I will NEVER forget.  Her name is Shayla. I promised thing one I would not say anything to Shayla directly, I was only going to talk to the doctor.

While we were in the waiting room, I started talking a another mother that was there with her 4 month old triplets.  After Shayla was finished putting eye drops in her babies eyes and walked away, the woman shuddered and said, “Man I hate that bitch”!

Of course I had to ask her why she felt that way, and share why I was in total agreement with her.  It turns out the woman, Jessy, had also called on Wednesday to cancel her childrens’ appointments for the 31st because of the weather.  Shayla proceeded to tell Jessy that she would call social services if she missed the appointment.

Man was my blood boiling! Thing One and I exchanged contact information with Jessy.  This was far from over.

Unfortunately, our appointment with the doctor was rushed since he was getting ready to leave the country.  The boys were both screaming after having their eyes examined, and I could not get to the doctor without Shayla, so I said nothing.

That’s on me. 😦

When we left the office it was decided that I would come back by myself, after she had found another doctor for the boys.  The week that it took to find another doctor felt like years.  While I was waiting to go back I did everything I could to find out how to file a formal complaint and an investigation with the nursing board.  I wrote a letter to the Dr.s office manager, and I told every other specialist that we had to visit for the boys that week what had happened to encourage them to maybe not refer patients to that office.

Once thing one found a new doctor. I immediately got in my car and went back to the Dr.’s office.  I’ve been told that I wear my emotions all over my face, and I have a pretty scary look that could kill.  When I approached the desk with my letter and complaint forms in hand I asked to speak with the office manager.  I think I scared that poor girl.  She started fumbling around trying to place a phone call to reach her and then left to try to find her elsewhere in the clinic.  A second person came up to me to ask if she could help.  I replied, “I am waiting for the office manager”.

Everyone from the reception area started offering suggestions on where she might be and offering to go find her, and then Shayla walked up to me.

“What do you need”, she says…….

I thought…..seriously?!?!??! and I replied

“Maybe YOU would like to step outside”?

“Excuse me?”, she said.

I repeated, “MAYBE YOU WOULD LIKE TO STEP OUTSIDE”?

Sadly that was it.  All of the staff from the office suddenly surrounded her and ushered her from the room.  The office manager miraculously  appeared and shuffled me into a conference room.

I repeated the entire story to the office manager including what I had learned from Jessy. I gave her the letter I had written and learned that the BITCH, I mean Shayla, was not a nurse but rather an eye technician, so there was no formal complaint process and no nursing license to go after.  😦  Kristie, the office manager apologized and said she would look into the matter with both my daughter and Jessy.

THAT’S IT!  She did call to follow-up my daughter and to hear the story from her directly, but not to offer an apology.

I don’t feel that there is anything else I can do.  I was not the patient.  I’m not even a legal representative of the patient.  Some people should not be in the services field at all.  I hope if anyone treats you this way you fight for yourself.  I hope that my daughter continues to follow up with this, although with the load she has on her plate it is doubtful.

This is my exercise in therapeutic writing

 

 

 

What’s the difference between 31 and 32 weeks?

In my last post I asked, “What’s the difference between 31 and 32 weeks?”

Over the next several weeks (54 days to be exact) I would certainly learn.

When you are talking about Gestational age or Fetal age the difference is…..

A whole lot more than “just 7 days”.

In several cases, it can even mean life or death.

The morning after the boys were delivered, Einstein and I went back to the hospital to check on Thing One, and to hopefully meet our grandsons.    Thing One had given us the pictures above when we briefly visited the night before.  The only other information we had was that Joey was delivered first at 4 lbs 7 oz (on the left in the picture above) and, Danny (on the right) followed at 3lbs 15 oz. They both looked so “normal”. Tiny as hell, but they “appeared” fully developed.

I couldn’t wait to see and hold and kiss and cuddle them.  After visiting with Thing One and receiving our badges, which generically explained the rules of the NICU and had to be worn at all times…..

Z led us to this  whole new “planet” called the NICU.

We had to go through a series of locked doors and wait to be “buzzed” through each one after our identities were verified.  Upon entering the NICU, we had to scrub ourselves up to our elbows in the surgical sink, and place all belongings in a locker.  Cell phones had to be placed in plastic bags.  After completing our scrubbing, we were led to a “pod”

NICU.jpg

This is the first time I saw my grandsons and I was terrified all over again.

Why did they have so many monitors, cables, and alarms?  Why couldn’t we hold them?  Why did Danny have to keep a rag over his eyes?  Why did they have to be on oxygen and need feeding tubes?  So many questions and not a lot of answers.

I think I have said several times before that I try to respect other people’s privacy as much as possible, so I am not going to go into specifics.  Instead, I will tell you a bit about the milestones that all babies much reach before they are discharged from the NICU.

  1. Most importantly, all babies need to be able to breathe on their own.
  2. They must be able to regulate their own body temperature.
  3. They need to be able to eat on their own and gain weight.

It sounds simple, but it is not.  At 31 weeks, babies lungs are not fully developed.  Because most can’t breath on their own, they certainly can not eat on their own (the they have to be able to breathe and suck at the same time).  If they can’t do that effectively, they can not gain weight to regulate their own body temperatures. etc etc etc.

Random fact here…. One ounce of baby formula contains 20 calories.  If it takes a baby longer than 10 minutes to consume those calories they are probably burning more than they are gaining.

If you are interested in reading more about the weekly development of preemies, this website gives a brief overview.

During their days in the NICU, I spent as much time as I could with them, while at the same time making sure that they were not overstimulated because most of their brain development happens while they are sleeping. (something else I had no idea about)

I mentioned earlier that the NICU was a whole new planet.  The boys had their own doctoral staff of consisting of Neonatologists, cardiologists, pulmonologists, gastroenterologists, dieticians, etc.

When they needed to see a specialist, or have tests done, things were performed very quickly, and after they moved to the new hospital the visits or tests were done right in their room.

danny ekgjoey hearingxrays (4)

While I am very grateful for the care my grandsons received in the hospital, I hope NEVER to have to visit a NICU again.

Have you ever heard the expression “when you hear hoofbeats think Horses, not Zebras?”  The times that I have heard it are in medical situations when your symptoms are compatible with a variety of ailments.  For example, if there is blood on your finger, it may be a caused by a papercut, not something requiring surgery.

While in the NICU, the thinking is reversed.  They immediately begin telling you about the worst case scenario.  I am honestly not surprised that more parents of preemies are not diagnosed with a degree of PTSD.

If you are a parent that has to go through this experience I encourage you to reach out for someone to talk to.  If possible, talk to other parents of preemies as they may be the only ones who understand the fears you are experiencing.

Thank you for reading along today, writing about it has helped me find some closure to that time.

I will have another story Friday about whether or not I punched the nurse at one of the boys doctor visits.

 

 

 

 

 

 

 

 

 

 

 

 

Terrifying AND Hysterical?

In November, I pulled a “disappearing act”.  One of my last posts was  Everything is ok, but. It was in regards to my Oldest daughter, Thing ONE.  At that time she was only 27 weeks pregnant. During the course of my daughter’s pregnancy, she developed Preeclampsia, and was put on bed rest.

On December 11, I made a brief post apologizing for my absence and explained (briefly) where I had been. BUT I wasn’t “back” yet.  On January 5th, my grandsons were moved to a new hospital and I made a brief update about that in 30 ambulances and over 100 patients.   Most of the month of January was spent in the NICU with the boys, and February I felt like I was living in my car, which is an improvement from living in the hospital believe it or not.  On March 3rd, I popped in again to post Not all who wander are lost.  I attempted to  say that MAYBE my universe was righting itself again, and that I would like to share some stories with you.

I would like to do that now if you will join me.

Beginning with when I “disappeared”.  (this is the terrifying part)

During the month of November, Thing 1 was sent to the hospital on several occasions because the doctors were having difficulty controlling her blood pressure. During her 30th week of pregnancy, she was admitted. I spent several nights at the hospital with her helplessly watching as the doctors tried to control her blood pressure only to watch it spike again within a few hours.  I heard words like STROKE LEVEL, the only cure is to deliver,…we need to wait til 32 weeks at least.

WHY?!?!?!?!?!  I asked, on more than one occasion.

What’s the difference between 31 and 32 weeks?

“It’s better for the babies” someone would say……..

but what about MY BABY?!?!?!?  I need HER to be ok!!!!

I’m going to pause here and tell a different story for a moment.

The story of Thing One’s birth.  ( a short version)  When I was in labor with THING ONE, I started hemorrhaging and remember yelling at the doctors that they needed to save my baby regardless of what that meant for me.  My parents were in the room with me, and my mom yelled, “NO SAVE MY BABY.”  They took me for an emergency c section and thankfully were able to save us both.  ok back to my original story….

OMG, now I have really become my mother!  How could I tell my daughter that at that moment nothing in the world mattered but saving HER life.  Of course I wanted her kids to be ok, but my first thought was that I needed HER to be ok.

After a few days of being at the local hospital, Thing 1 was  rushed via ambulance to RMH, a hospital with a level 3 NICU (Neonatal Intensive Care Unit), where the twins were born via Emergency C-section at 31 weeks.

Thankfully both her and the boys survived!

I have purposefully left out several details about the week Thing One was in the hospital before the boys were born because, while I have no issue writing about MY LIFE, I don’t feel that it is my right to share too much about others. Also, it was one of the most terrifying times of my life that I DO NOT want to relive.

Ok now for the hysterical, at least funny now that it’s over,  part

This is the story I will tell my Grandsons when they ask about their births.

OK, Please picture this….

Thing One is in surgery, her husband Z was with her.

Einstein is trying to hold me upright while I am freakishly pacing the floor (still in the damn boot).

My phone rings……  It’s Thing Two

As I answer the phone I think she might be crying, but I can’t tell for sure over the piercing alarm coming from the phone along with the sound of dogs barking uncontrollably.

Grace : Thing Two are you ok!?!?!?? Where are you? What’s going on?

Thing 2: ARGH &$#*%&@*($#%&W*($%&*$%

(barking and alarm continue)

Grace:  WHAT DID YOU SAY?!?!?  I CAN’T HEAR YOU!!!!

Thing 2:  MOM I NEED THE DAMN ALARM CODE TO THING ONE’S HOUSE!!!

Grace: Um I don’t know it.  Why are you there?  Dammit make the dogs stop barking!

Thing 2:  I can’t! They don’t like the alarm! Mom I need the code!!!!!!! the police are going to come!!!!

Grace:  The police?!?! Are you ok?!?!?!?  What’s going on?!?!?!?

Thing 2:   Mom I need the code to shut off thing one’s alarm.  I didn’t realize they changed the code and I was picking up clothes for her and z, now the dogs are going crazy, I can’t shut off the alarm and the police are gonna come and I’m gonna get shot.

Grace:  What?  You got shot?

Thing 2:  (now definitely crying) Mom please just help me figure out the code!!!!

(At that exact moment, Z appeared in the hallway in front of us.)

Grace to Z:  I need your alarm code, thing 2 set off your alarm…… OMG wait a minute WHY ARE YOU here?!?!?

Z: Thing One and the boys are ok, they are taking her to recovery and I went with the boys to the NICU, the code is ****.

(Apparently we were standing right outside the recovery room door and I could see them wheeling Thing 1 in the room.)

To thing 2 ……I yelled….. “the code is ****, if the police come just tell them to call the hospital to verify or call me.  I gotta go!”  and to the nurses that had gathered around I yelled, screamed, cried…”please just let me see her for ONE second.”

THEY DID!!!!

cheese

I don’t know if it was from the drugs or seeing her children for the first time but this is what I saw when I walked in the room….

(This picture was taken at another time, but you get the point right?  Ear to ear smile without a care in the world….)

That’s all I needed.

The nurses told us it would be a few hours before we could visit, and Einstein directed me to the waiting room.

We sat there for a few moments trying to absorb all that had just happened when my phone rang again.

It was the police officers’ that had responded to the alarm.  They wanted to let me know that they had arrived at Thing 1’s. They believed the story that thing 2 told them ( no one could make this shit up), the code had been verified, and thing 2 would be coming up to the hospital once she calmed down.

Here is thing 2 recapping the events of the night

abby alarm story

While we waited to see our daughter, Einstein and I made our phone calls to our parents and Thing One’s Best Friend.   Z sent us a picture of each of the boys in the NICU, which I will share later this week.

Although the boys were born at 5:24 and 5:27 pm, and I got to see thing ones face and hug her for about a minute, we didn’t get to visit with her until almost midnight that night.  In fact, I think we only stayed long enough for another hug and a few congrats to the new parents.

Meeting the boys would have to wait til the next day.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Hemangiosarcoma

If you have followed me for any amount of time, I am sure that you have heard me talk about my GSD, SNUFF.  If you haven’t heard about or met her please take a moment to get to know her while there is still a little bit of time.

When you spend as much time with your animals as I do, you quickly notice any different or unusual personality traits.  Last week, Snuff ‘s ears were down, and when I would get up to leave the room she didn’t sprint up in front of me to see where we were going.  She was eating normally and when I felt her belly and limbs she didn’t cry or pull away but she just didn’t appear to be “up to SNUFF”.

I called the vet and said I needed to bring her in to be examined, for the reasons I mentioned above.  They told me to watch her for a couple of days and see if anything changed.  I made an appointment for Friday.

When Dan got home, I asked him to look at Snuff and see if I was overreacting.  When he lifted her chin to look into her eyes, she collapsed on the floor.

We called the vet back and they said to bring her in immediately.

A series of tests and xrays showed that she was bleeding internally and if we had any hope to save her, she would need emergency surgery.

OK SO DO THE GOD DAMNED SURGERY!!!!!!!!!!!!!!!!

Several hours  later, the doctor’s reported that there had been a tumor on her spleen that had ruptured, so they performed a splenectomy.  They said that her liver and kidneys looked good, but that we should still send the tumor out for a histopathology to see if it was cancerous.

Over the last week Snuff’s personality has returned. I told myself that the tumor had to be benign and that she would only continue to improve.

(She has really been letting me know that she hates wearing the cone to prevent her from licking her staples)  attitude

The vet called with the results Thursday and crushed my hopes.  We were no longer calling the tumor a hemangioma, but now it was called Hemangiosarcoma  ….. CANCER.

They have given her 2- 12 months to live stating that the former is more likely as it is a very aggressive cancer.  I am hoping, wishing, and praying or whatever its called that it’s the later.  I am just not ready.  Although I know I never will be.  Snuff is part of the family!

As I try to wrap my head around this news, I am trying to find comfort in the fact that we do still have some time and we have loads and loads of memories.  I am going to share some now.

snuff choosing usball obsession

<– This picture is of Snuff and D.O.G. a few weeks after she choose us and we brought her home.

The picture of the right demonstrates he obsession with “balls” and playing fetch.

 

I will upload a video to youtube later this week of Snuff and her “pet rock” (apparently I don’t have the right subscription to put it here…..smh and another about her making small talk with me.

We were trying to figure out why snuff “put herself in timeout”

snuff timeout

She didn’t.  She was using her body to keep the other animals away from HER BALL…smh

animals

Speaking of other animals…. Yes I have a few.  Thing 2 was giving them treats to try to  get a “family picture.”  From left to right there is Neewollah (black cat), D.O.G (boston bull dog), Beauty (other black cat and neewollah’s sister), Snuff , and finally Foxy (the White sheep?..I mean cat) of the family.

I think the only think Snuff cares about more than her ball is Thing 2.  They are Best friends.

20190301_194602.jpg

Thank you for letting me introduce you to SNUFF.  I am sure I will be posting more pictures, stories, and videos in the future.

As shitty as this news has been, I do feel blessed to have a “warning” if you will.

For all of you that consider your pets your family too, is there anything you can recommend to ease the pain it causes you?  Is there anything you do or have done to “keep them close”?  For example, I will be getting a tattoo of her pawprint.  I found a “memory box” picture frame with a place for not only her pictures, but her collar as well.

 

 

 

 

 

 

 

 

 

 

Am I doing it wrong? and what is “it”?

I titled yesterday’s post … All who wander are not lost…. which is kind of funny for 2 reasons 1.  I didn’t talk at all about why I called it that and 2.  I think I was trying to convince myself that I wasn’t lost.  Let me try to explain….

I think I have mentioned before maybe 1,000,000 times that I am my own worst enemy, and that I am always in competition with myself.   While it is good to examine yourself and work on things that you would like to do better, I often forget that you can’t be the best mother, and friend, and employee, and so on and so on all at the exact same moment.  In order to excel at anything you have to give it time, practice, and focus.  It’s also helpful to have an end goal.  I don’t have an end goal.  My priority is to be that best at what I am doing at the moment I am doing it.

I feel like I am rambling, but I hope that in the end I make some sense.  Let me use friendship as an example.  Let’s say friend A shows up at my door crying at the same time I happen to be putting the finishing touches on a a project that I have been putting off for months.  My project is instantly forgotten and I go into the BEST friend mode I can.  That means I am listening to that one person, not reading facebook, not texting, not finishing my project etc.  My friend needs someone to listen, and that’s what I do.  Unfortunately, that means, my project doesn’t get finished.  I probably run out of time to call someone else back.  I may cancel upcoming plans etc etc.  By the time I am done listening and comforting my friend (which is important to me), the hours in the day have passed.

When I am by myself after that, I feel like I have not accomplished anything with my day.  Well at least not anything that I intended to.  My brain continues to spiral and I feel like a horrible friend to my other friends because I didn’t answer their calls, or I cancelled plans etc.  I call this focusing on the biggest fire.  For the last few months, ( to be honest for most of my life) this is how I prioritize each day.

I was talking with my friend Bob the other day, and he asked how I was doing with quitting smoking, losing weight, and my blog.  (all things that I told him were important to me the last time I saw him)  After I updated him that I had not lost any weight, and in fact had gained weight, that quitting smoking felt like someone was pulling my fingernails out one by one, and that I hadn’t touched my blog in months, he responded that I was the queen of excuses.

OUCH THAT STUNG!

But he was right to some degree.   Of course I hadn’t made any progress on those goals because I was busy focusing on other things that were important to me.  I’ve still been living my life, I have still been growing as a person, but I have not moved anywhere on the goals I stated.  What does that mean?

While I figure that out, I do have lots of stories to share as I mentioned before.  Some good some bad, and I am really looking forward to catching up with everyone, But I still can’t help but wonder if I’m doing it wrong.