That Little Old Dock

I have been a terrible blogger this week. Truth is I wanted to tell you, my extended family, what has been weighing on my heart but for some reason I had a very difficult time writing it.

Turns out that what doctors thought was post-partum cardiomyopathy (heart failure brought on by pregnancy) may not be what I have/had at all. The Mr and I had our suspicions since day one that my immune system was to blame and we told everyone so. However, there was neither a person that took us seriously or the research to guide them so my diagnosis stood.

It turns out that I may very well have an immune system disorder in which your antibodies will attack your heart/lungs if a foreign body (fetus) is presented. This would also explain why my heart failure returned because with PPCM heart failure NEVER returns unless you were to get pregnant again.

I was told to have another child would be fatal therefore doctors recommended a hysterectomy. Now, if this new diagnosis is correct, I could have had more children biologically.

A firm believer in everything that's meant to be will happen, I know if anything had been different, we wouldn't have our little Kyrgyz princess and I simply can not imagine a life without her in it.

With that being said though, the choice was taken away from me. If I wanted today to have another biological child, well, I can't.

It sucks.

The one place that could ease this pain is home. Home in Michigan, 2000 miles away, where in the backyard lies a humble little dock extending over a pond. I want nothing more than to dangle my feet over it's edge and watch the movement of the water distort images of trees and birds.

All of my problems growing up were pondered on that dock. Oh those problems seemed so big at the time; boys, mean girls, bad grades. I needed nothing more than a little time on that dock and I would have a certain inner peace about life. It is a magical little place.



My life reflects the life of that little dock. I've faced the harsh elements and they've left their scars and splinters. The elements may rock and weaken it's boards but because it was built with care and purpose, it will withstand the test of time.

This was the dock that built me.

Remember When

Life felt free and your worst nightmare was forgetting your homework? When responsibilities consisted of feeding the animals, making your bed and brushing your teeth twice daily?

I remember a day back in 2003 when my responsibility became surviving post-partum cardiomyopathy, and I did. Fast forward to current. When asked by many doctors about my history it has become natural for me to mention my PPCM. Until a week ago that is. An endodontist asked "is that still what they are calling it? You know, since it came back and all?" "Well", I replied, "I guess at this point it would be just cardiomyopathy".

Then yesterday at my cardiologists office I heard him tell the nurse that my new diagnosis is cardiomyopathy. So there it was, solidified in black in white, I am no longer a PPCM survivor. I am someone battling a very different disease, cardiomyopathy.

I would never expect this new diagnosis to effect me in this way, but it has. I no longer can prevent this by not getting pregnant. I can no longer be told that this won't return. This is a whole new game I'm playing and it's darn right scary because there is no control factor here. The only thing I can do is be a responsible patient by following a medication regimen and report anything unusual to my doctor. The rest is simply up to the Good Man Himself. The ironic thing is that no matter how much I have felt like the one in control, I never have been nor ever will be.

Life is a series of ever-changing responsibilities.

I bask in the glory of the little ones and thank God for the big ones, as there is something to learn from them all.

The News

OK OK folks, I'm sorry. I know I left you hanging with the good news. Leila and I are in good ol' Michigan, again. This time to meet my new niece or nephew and her cousin hopefully real soon, in fact were getting ready to go for a walk to expedite the process.

Now on with the show:

I got a call from the doc the other day. My ticker is responding to the medication! I'm not yet where I was before but super close. We now know that the medication is working and there's a good chance I'll be around for a long while. Thank God and thank you all for your prayers. It's truly a miracle to recover from this twice and I pray it never comes back. Will I be on the medications for life? Yup, most likely. They make you feel horribly tired but I'll take it.

Right after hearing the news, Tariq and I had a date night better than any other. We went out to eat at a great restaurant and then to Phantom of the Opera.

Good food, good company and a good heart.

Oh what a night.

Today and Six Years Ago

I arrived at the doctors office bright and early.

My daughter by my side, my ever-present angel.

"Kelli?" I heard the nurse call from the door.

My turn.

I lie on the table as she asks "you look so young, why are you here and is this your first echocardiogram?"

"First thank you for the young comment (since being diagnosed with heart failure....again, I have felt like a 90-year-old, or at least what I think a 90-year-old would feel like). Second, I'm here to find out if there's been any changes in my heart function and third gosh I wish".

I replayed her question in my head. Have I had this test before? My mind wondered as I wait for her to prepare the machine. I went back to the hospital room where I was admitted for shortness of breath and fluid on my lungs three short days after the birth of my son. I could hear the echo tech in the hallway discuss a case with the nurse. The nurse said to him "you know what were looking for right?" "Yes, postpartum cardiomyopathy" he replied.

My heart sank, I knew what this was, I knew it was me they were talking about.

I called Tariq, he was taking our newborn son to his first pediatrician's appointment. "You know what they think I have?" I said to my husband. "Their not talking about you babe". He believed I had a pneumonia or something. None of us wanted to believe the worst case scenario.

In the hospital room I am alone while they run a probe covered in cold jelly over my heart. I look at the screen, looks oddly similar to the ultrasounds I was used to receiving having just been pregnant. Only this image was squeezing and a funny whooshing noise was present. Then red and blue went from one side to the other.

From this point on it's a super fast blur of memories:

I remember my parents visiting the hospital. I remember the doctor coming in. They say something along the lines of we are very sorry, you are in heart failure. We have a cardiologist coming in right away. I call my husband, I cannot speak for I'm crying from the depth of my soul. My husband arrives and never leaves my side. Cardiologist arrives and says it's even worse than we expected. I'm told I may get better with time, may never recover, may require a heart transplant. Then another doctor arrives to tell me I can never have anymore children. I've just delivered my first child whom I cannot even be with, whom I cannot breast feed, whom I will not be able to take care of for six long months.

"Are you ready for the cold jelly" asks the nurse. "You bet" I replied.

Fast forward to the present and however many echo's I've had. The screen that appeared so foreign to me at one point is now just a part of my life.

I'm filled with such gratitude that my life here on earth was spared to enjoy my husband, my kids and even the constant medical trips. My biggest fear that plagued me since recovery the first time was a relapse. Now that my fear has come true, I'm left with the choice to face it head on and then move on. I feel as though my heart has healed and I've shared those thoughts with you. Now that I know it's possible to decline a part of me will always wonder what's around the corner. I am so incredibly blessed with a husband that gets it, that gets that I don't always feel spunky and great and knows when I need a breather. I'm blessed that he has promised to walk with me no matter what. My two children are happy, healthy and beautiful. What else can you ask out of life?

No matter what the results show, I know nothing can stop me from fighting anything in the present or the future. I've got too much to live for.

Date Night Michigan Style

I'm off on a date.
Yup folks, I'm the third wheel tonight.
I don't mind.
Quality time with my bro and his wife.....ahhh, my soul has been at such peace since my arrival.
From this trip alone, my heart has healed.....I betcha.
Just wait until that next scan, all is well.

Movin On

I put on some amount of make-up daily, some day's more than others.
I dress like I have somewhere to go.
I purchased a new grown-up perfume since I've worn the same scent since high school.
I'm volunteering at least twice weekly at J's school.
Leila and I leave the house to go somewhere everyday.
Sewing is my new hobby and I just completed my first project, an apron.
We found a new church home that we adore and attend weekly.
I'm going to be baptized for the first time on my birthday weekend.

I made a conscious decision to do the above things to help me forget that I'm sick. I found that when I'm dressed up and feel good about myself, I'm able to trick myself and the feelings of dread disappear.

I'm not letting my sick heart take over my world. In fact, most days I don't even think about it anymore. Don't get me wrong, once in a great while I still have a good cry for as long as I need, wipe my tears and move on.

I'm really proud of myself.
It's easy to feel sorry for yourself, wonder why me and dwell on the negative.
It's more difficult, in the beginning at least, to concentrate on the positives.
I chose to have faith and trust that God is by my side and in control.

I trust I'm to learn something from this, maybe I already have.

Change of Seasons....Change of Luck?

Fall has begun in the our household.

It is cold (90 degrees), rainy (drizzling) and cloudy (partly), but it's the closest to fall in Arizona gets. I've spent most the morning placing things here and there, absolutely my favorite time of year.

My annual "Yahooo! Fall is here" gift is on it's way to my mom. I hope you enjoy it mom!

Some amazing things took place this week. The first being that the doctor finally called with some good news. He said, your ejection fraction has come up 2% since starting the medications! Now I know that's not much, but it's not much in the right direction. Certainly something to celebrate.

I woke up Friday to find that I won something, and not just something, but a gift certificate to Single Stone Studios! Yahoooooo! Already have ideas of what I would like. I know it must have killed Shelly to post my anti Ohio State comment on her blog, but she did, and I'm proud of her. That's the first step to realizing she has been brain washed by her husband (he's brain washed too). Michigan kicks off the season on September 5th ya'll! Mark it on your calender.

This is one possibility:

My friend called to ask if we would like to join them for the first Cardinals home game (pre-season). A date night?! When? Where? What time? I'm all over that! Remember my favorite pair of heels I showed you before? I got them out of the closet (they were the perfect cardinal red), dusted them off and put them on for the first time since March, the back surgery. My girls: I've missed you. I felt my sexy coming back.....until I noticed the excruciating blisters you were causing. Check out these two hotties!
Dinner time! Some amazing things have happened this week. I pray our luck is turning around. If this week is any indication, I'd say it has.

In celebration of the beginning of my favorite time of year and returning heart function, I'm holding a give-away! Here's the deal: I love the holidays; fall, Christmas, New Years etc.... Share with me your family traditions, big or small. I'm always looking to add new traditions to our holidays. So, send me your favorite family traditions! I will choose one that I want to add to our families traditions........And what will you get in exchange? The winner will receive a large jar candle from Yankee in my new favoirte fall scent!

Leave me a comment here on the blog or e-mail me at: waterford@cox.net

You have until Friday 5pm EST.

Good Luck!

Can't wait to read your ideas!!!

Appreciation

I look into Leila's eyes and wonder if she would even remember me.

I am thankful that I was healthy enough at one time to experience the joy in saving a child's life.

No matter what happens, she is far better off here with only a daddy than in Kyrgyzstan, alone.

I can only hope that the love I have given her thus far could last her a lifetime.

I watch Jalyn play and I'm thankful he's old enough to know his mommy loves him.

He understands what is going on even though we've told him very little.

He is Mommy's Boy. He holds me and comforts me and brings me such joy.

It is my greatest fear to leave my children. But when I look into their innocent eyes or watch them play quietly, I am reminded that my time with them has truly been a blessing. These are God's children and He choose me to raise them on this earth. I am so blessed that He choose me in the first place.

I have had so many write and say that I have been such an inspiration to them. I have a difficult time in seeing myself as so, but am honored nonetheless. I know each and every one of you that has said those very words to me. I know your character and your strength. You would do the very same thing. You would put your children first just as I have. You would have faith that the road ahead is paved by God so that no matter where it leads, it is where you are meant to go. So I'm going to tell you the same thing a very special person said to me: When you are searching for inspiration, look in the mirror. We each have our own experiences with disappointment, being lost and overcoming the most difficult times.

Look in the mirror and recognize that you yourself are an inspiration. That you are brave.

I'm finally able to do this myself.

The Second Stage: Anger

WARNING: I cannot be held responsible for the following post. I'm allowing myself one pissed off post and then movin on. Feel free to disregard as I get a few things off my chest and relieve this weight.

I am pissed. Beyond pissed. Again? Seriously?!
I have anger inside I never knew I was capable of producing.

My poor, poor husband. He was witness to my emotional breakdown. He wasn't quite sure what to do with me. Hell, I wasn't quite sure what to do with me.

Why again? It's so rare. Nothing is "rare" to me anymore. Once something has happened to you it's not "rare". And by the way, saying what you have is "rare" to someone is not a good thing to hear. Translation: Doctors don't know what in the hell to do about it. There is no research to guide them. Your screwed.
Don't say this to someone.

For the record, I am not brave. I did not ask for this. I do not want this. I am scared as hell. What other choice does a mom have other than to pick up the pieces and move forward for her children?

I am not an inspiration, at least, I do not see myself as so. That puts pressure on me to live up to that expectation and quite frankly, I'm allowed a sh**** day every now and then. I keep my chin up for the most part, but cannot feel bad about having a good cry either. To hide those times of hurt and anger would only serve others that don't want to feel what I'm feeling.

"Your going to be just fine" is getting quite old. Unless you are God, you cannot possibly know that. I am not being negative, it's called being realistic. Something along the lines of "it sucks and I'm sorry" would be appropriate.

Disclaimer:
My intent of this post is certainly not to offend anyone. I would have said the same things to others myself. I'm moving through the stages and have to allow myself to do so. If you do not allow yourself these emotions than you may never move past the stages and reach acceptance.

Right now I'm mad as hell and have every right to be.

There are greater things yet to be done in this city.

Energy. Where have you gone? Are you being held for ransom by those medications in exchange for a functional heart? I can't find you and I really need you back. I need you for all the great adventures I've signed myself up for. Because you left, I had to delay my return to the work force and I was really looking forward to that new phase of my life.

In an effort to maintain my emotional well being I have searched for alternative options. I signed up for cake decorating classes and offered myself as a volunteer at our church. I mentioned to Tariq that I would like to sew. "Go for it and get yourself a machine......Happy Birthday." What a wonderful husband I have. Not only did he support this new venture, he accompanied me to a store. Not only did he accompany me, he was present as we spoke to the ladies about the machines. He asked insightful questions and gave me his full blessing in making my decision.

Even though the reality of my situation shows its ugly face once in a while, I've managed to work through the pain and move forward. But I cannot be an active participant if you do not come back to me in some way shape or form.

There are greater things yet to be done in this city, this city that I have not been so partial too. There has been good here, but I want it to be better. Not saying this is going to happen, but I could not leave this city without giving it full effort. I want to enjoy it and experience it.

Please come back to me energy and allow me these greater experiences.

One Week

One week was all that was needed.

A week of no cleaning, no cooking and no laundry.
Answered few e-mails, took few calls and sought permission to let prior important tasks slip.
Ate salty foods, avoided the gym and slept in.

One day spent at the pool with my children.
Was dared to take a ride on the wild water slide and accepted.
Played ring around the rosie.
Offered up my back for children to enjoy alligator rides.
Didn't watch the clock.

Retail therapy is always a great distraction.
Got crazy and let six-year-old pick entire school wardrobe.
Even crazier and let 21-month-old pick winter wardrobe.
Then down right foolish and picked myself out a nautical pair of jeans.
Handed 30% off coupon to the woman behind me in line who's face I could hardly see from the mountain of clothes she cradled for her children. Woman was beyond grateful.
Stopped in to Gymboree and handed an old lady purchasing a new pair of jeans for each and every one of her grandchildren, a 20% off coupon. "Can't you use this for your two beautiful ones dear?" "I sure could" I replied, "but I bet yours are just as beautiful". "They sure are and I appreciate this more than you could ever know."
Had a chat with another old lady in line at McDonald's. Discussed marriage, kids and a trait we had in common: Lack of breasts. She enjoyed her hot fudge sundae, I made sure to check before we left.

Enjoyed a day with a friend registering for her little miracle.
Laughed, gossiped and ate at the "OG".

A week to keep moving and find the positive road.

A week to let loose with no restraints, no appointments and no expectations.

Now I'm ready.

Thank you honey.

Here We Go Again

Ding Ding! Rouuunnnnd Twwwoooo!

Yes

I am back in heart failure.

The Diagnosis:
I received the call today. The reason it took so long is because there is subjectivity in reading Echo results. My Nurse Practitioner had three specialists review my echo at different times only knowing my history and current symptoms. All agreed unanimously that my new EF is closer to 40%, a definite decline. Tariq explained what's going on to me in layman's terms (even us nurses need that sometimes:). My heart is not pumping efficiently from the bottom and it's placing increase demand on my septum (wall that separates the ventricles of the heart) causing stress on my valves therefore causing regurgitation of the mitral and pulmonic valves.

What Next:
I was asked to come in today to have a "King of Hearts" placed on my chest, a monitor for one month. I think that name is cute! They drew a slug of labs to try and figure out the why behind all of this and gave me scripts for the heart medications.

And Me?
So how am I doing? Well I haven't had time to think of that really. Jalyn has been with me and I'm trying (and doing a rather good job if I don't say so myself!) to stay positive and not cry in front of him. I limited my phone conversations to my hubby and nanny to coordinate care for Leila so that Jalyn wouldn't have to hear this over and over and realize something is very wrong here. He knows that mommy's heart is sick again, and it will get better again. That's all his little heart needs to know.

The Outlook:
A repeat echo in 3 months so see if medications improved heart function. If not, well let's just say we'll cross that bridge if it comes shall we? The first gal to decline after successful recovery did so after six months of obtaining a normal EF. She then went on to receive a heart transplant and is doing well. If you get on-line and read (I don't advise this, but need to take my own advice) you will find a rather grim outcome predicted. HOWEVER, much of the research is talking about women who had subsequent babies not about women like me. I refuse to think this way. I have total faith that with proper medications my heart will once again recover.

My Team:
The team that helped me through once is there and ready again. None of us thought we would ever deal with this again so it's definitely a surprise, but were all in for another fight. There is not one person that surrounds me that this doesn't effect in one way or another. Everyone is being so strong, not breaking down or freaking out (at least in front of me) and I thank you so much for that. I need your strength (I pull from it), I need your battle gear on and I need your love more than anything. I feel lifted up in the Lord's hands and I KNOW He will pull me through. There was a reason the first time and I trust there is a reason now.

Well, we've heard nothing......

My cardiologist is out of town so his partner is covering. My doc is great at reading tests and contacting his patients quickly, his partner, not so much.

He has been asked by my doctors nurse practitioner to read my results asap.........

So into the weekend we go with no answers. I really just want to know at this point. I would be lying if I said I am not scared, but I am ready to fight another battle if called to do so.

I just want to know.

You will all know when I do.

Thank you very much for your phone calls, e-mails, and for adding my family to your church's prayer list. I cannot say enough how very much we appreciate all the support we have been shown.

God Bless,

Rie

No Need To Ask Why.......

I vowed to exude positivity this year. The gods above continue to send challenges my way (at least this is how I view it) yet I remain determined to prove to them that in every situation I can and will find the good.

Jalyn's party was a success. The cake turned out well, well for a gal that has no idea what she's doing. The mess I made during the process was incredible! The kids went crazy when they saw the cake and even crazier when they heard I made it. Making your child's birthday cake is so worth the extra chaos. Jalyn was so excited watching the whole process from beginning to end. He chose yellow and strawberry cake layered with fresh strawberries in between. It was absolutely scrumptious.

As you can see, the party was Mario Brothers themed. Even though it was a simple party with only three boys, it is still important to me to bring all of the birthday elements together for a special day. He received amazing gifts! Lego's, Lego's....more Lego's, a marshmallow shooter, dinosaur puzzle and some new items for first grade. J is a very lucky boy.

The women of the party.

What are those silly boys doing out there?

My friend Laura came and brought her daughter Brooklynn. Tariq was on call so she came to help me out with the dinner etc.......Thanks Laura!!!

Here comes the rain I referred to early on in this post.

I received a call from the cardiologist yesterday regarding the stress test I had a week ago. The results showed that I was back into heart failure with an ejection fraction (shows how well your heart is pumping with normal being anywhere from 50-65% or even higher in some people) of 40%. My EF prior was 55-58%. To be completely honest, I shut myself in my closet (trying to shield the children from my emotion)screamed and cried and allowed myself this reaction for a few minutes...then time to suck it up, deal with it and move on with whatever needed to be done. I've beat it before and if needed, I'll beat it again. They requested that I come in today for an echo cardiogram (an ultrasound of the heart) for a more specific reading. My Mr came home immediately from work cancelling all appointments for the day and my dear mother and father-n-law came and took the children for lunch and play at their house. Tariq calmed me down, took me to lunch and then tucked me into bed. I slept from 1-6pm.

Jalyn follows me everywhere I go and I mean everywhere. Some new phase I assume. He heard my cries and wondered why. After I calmed down I explained it to him like this:

"When you were born you know that mommy's heart became very sick but with time I got better. Well, mommy's heart might be sick again, but with time it will get better again. But mommy is sad because it's not fun to be sick...right? Tomorrow mommy will go for a test to see just how sick my heart is. But everything will be OK just like it was the first time. I love you and this is in no way your fault or anyone else for that matter. We will continue to love each other and live our lives just the same, nothing will change."

His response went like this:

J: "I want to go with you to your test."

M: "Baby you cannot go, they do not allow anyone to come in the room."

J: "Well there's a waiting room isn't there?"

M: "Yes but it will be very early. Miss Laura will be here when you wake up and I might even be home before you wake".

Then he gave me the biggest hug ever and asked what was for dinner.

Things always happen for a reason and I'm a true believer in that statement. In everything, there is something be learned.

It is almost a guarantee that I will be placed on the cocktail of heart medications all over again which (pardon my french) totally sucks as they drain every ounce of energy you might have left after raising two children. However, if it means no energy verses a decreasing heart function....well then the choice is obvious.

My mother-n-law gave me a jewelry box with this scripture on the front during my bout with heart failure the first time around and since then I have read it daily.

For I know the plans I have made for you declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.

Jeremiah 29:11

I believe I am not in harms way, but in God's hands.

And just to lighten things up a bit, here are a few pictures of the things that make me smile and bring the most comfort.

My boy Amir. He has lost so much weight since being on thyroid medication. I'm so darn proud of the boy...and to think we made fun of his plumpness (we lovingly call him sausage on sticks because he looks like a sausage and his legs look like sticks, don't know how they hold him up:) and deprived him of his favorite snack when it really wasn't his fault at all....Bad mommy moment! Oh to have the life of a dog!

Tariq and I were cleaning out my bathroom and Leila took a liking to my velcro rollers. She kept them in her hair the entire evening! What a beauty eh?

See??? All is good in the world after all, no matter what.

Doctor's Out Our Ears......

Forget about the fact that we live with a doctor, we can't seem to stay away from them!
Leila will have her MRI to diagnose the cause of her cerebral palsy. It's a total bummer that anesthesia is needed, but answers will help to complete her lifetime puzzle. I'll be going alone which I'm a little nervous about. Tariq was unable to get the time off work at such late notice. I'm not worried about the test, more about driving home with a child that just had anesthesia and no one to keep a constant eye on her during the hour-long drive home. One of my closest friends Kristy is a nurse in the MRI department, luckily she is working that day. Also, the same anesthesiologist that was there for her surgery will be there for the testing. We love this doc.

I'll be going back to my cardiologist tomorrow. While on vacation I awoke during the night with a crushing, severe pain all across my chest. The color ran from my face and sweat poured out, I began to feel faint. With my son blissfully asleep next to me I grabbed his hand and prayed that if I indeed were having a heart attach that He would just take me now. The pain was that severe. I lied down grasping my chest unable to yell out for my husband sleeping at the back of the trailer. Thankfully the pain passed after about two minutes too long. I've since experienced pain radiating down my left arm and neck with occasional difficulty breathing and palpitations. While I pray it was nothing serious, I'm being pro-active about my health based on my heart history and because I have two of the most beautiful children at home and a very handsome husband. I'm not willing to leave them over ignorance.
***Yes I'm a nurse, yes I should have called 911, yes I am stubborn.***

Jalyn decided to get his first ever sinus infection, he's getting so old! Antibiotics and decongestant should do the trick.

I hope this is the end of it as we are leaving for the magical land of Disney very soon.

If you are reading this and are a praying person, it would truly make my day if you could pray for Leila's MRI day. Please pray that all goes according to plan. Please also say a prayer for a gorgeous little girl named Anara. She is from Kyrgyzstan as well and her mommy and daddy rock! They helped us through our most trying times in our quest to bring Leila home. Anara is having surgery as well. Thank you, I truly appreciate it!!!