Friday, July 31, 2009

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.

Thursday, July 30, 2009

The Scent of Life

It's amazing how a scent can take you somewhere.
Somewhere back in time.
Somewhere towards the future.

This scent takes me home. I am reminded of leaves crunching under my feet, the crisp air, wearing my favorite sweaters, no doubt surrounded by family. I can hear the water wheel turn around and around and the buzz of bees that simply want a taste. Picking the perfect pumpkin and wagon rides.
This scent is freshly made apple cider and warm donuts.
The scent of autumn.

This scent always means something good is coming out of the kitchen. My husband is working hard and pouring his heart into a meal to feed his family. I hear the dishes clang as he is loud and anticipate the mess as he is messy. A masterpiece is upon us. I love my husband and the delicious food he feeds me. His food feeds my soul.
This scent is garlic and onions; my two favorite additives and his two kitchen staples.
The scent of love.

This scent is warm and cozy. I feel at piece as though nothing in the world matters. There are no expectations, no discussions and no other love exists like it. It's not always the greatest scent but it is the greatest feeling.
This scent is the love of my boys, my dogs; Jafar, Amir and Nasser.
The scent of fulfillment.

The day I received word that I am back in the battle of my life, I was blissfully shopping a sale at Bath and Body Works. As I was checking out the gal said: "Would you like to try our new sample coming out in September?" "Sure" I say. So I slathered it all over, I just loved this new scent.

The call came and I was devastated but had to keep calm and collected for my children. I had no time to process this news. My husband booked a massage for me to have some time to myself and escape from reality for just an hour. However, I chose not to escape. I chose to think about how I will move forward from here regardless of my health. Regardless if I decline or recover.

While the lady was gently massaging my soul and trying to put me to sleep for a while, I was thinking:
This scent I will remember forever. The scent of the lotion I slathered all over before my life was changed forever.
This scent is called:
P.S. I love you.
I believe this was no coincidence. I was being told by God that even though I was hurting and wondering why, He loved me and there is a plan. Have faith.
This scent is Hope.

Tuesday, July 28, 2009

Here We Go Again

Ding Ding! Rouuunnnnd Twwwoooo!
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.

Monday, July 27, 2009

Adventures of the Big Girl Bed

The time has come, Leila has begun to place one foot ever so delicately over the crib railing. She has rightfully earned her nickname "Little Monkey" as she will climb on/up anything. It is only a matter of time before she topples over.........not good.
I went and bought her the big girl bed I had envisioned her having since before she came to us. She loves the idea of her new bed being all set up in her room however, she doesn't love the idea of sleeping in it. Nope, she prefers to have playtime in the dark instead. Why not, it's So-Much-Fun! Sorry.......can you hear the sarcasm seeping through?!

We have her crib on one side and her big girl bed on the other.

Today we ran errands all morning in an attempt to wear her out so that she wouldn't care where she laid her little head. She looked drunk as I pulled her out of her car seat; eyes rolling back and limp. I placed her in her big girl bed and BAM! Her eyes opened and she started laughing. Laughing at me and my attempt no doubt. I still tried to make a go at it, what can I say? I still had faith. Then......the infamous sound of her Barbie piano. Back to the crib she went.

I've been seeking advice from all the best and coolest moms that surround me. The best advice had to be: "Our friends turned the crib up-side down so their baby could not climb OUT or GET OUT!" Now, no matter what your right or wrong meter is telling you right now, you've got to admit that piece of advice is darn clever and funny!

My thought is to absolutely baby proof her room and then let her have at it! If she wants to stay awake all night playing, well she'll be one sorry girl in the morning with all the activities we'll be sure to have planned! Eventually she should get the point right?

Just one problem, I have to remember who I'm dealing with here. She is bright, witty, focused and stubborn. She will get her way one way or the other.

I have to be smarter than the 21 month old!

Advice???? Please!!!

Friday, July 24, 2009

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,

Thursday, July 23, 2009

Interesting article if you have time......
New York Times

Wednesday, July 22, 2009

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.

Wednesday, July 15, 2009

Extractions, Toothfairy, Bunk bed and PTSD...What a Week!

Jalyn's adult teeth were trying to come in, yet his baby teeth are not budging. His big man teeth are coming in crooked due to the overcrowded issue going on in his mouth. The dentist gave Jalyn the option of doing the extraction right then or another day. To my surprise, he requested it to be done now and without me in the room! This was the first time he went back alone even for a cleaning! He took it like a champ. The dentist, who lives in our neighborhood and has seen Jalyn since one year of age, came out and said to me "your little man's growing up!" I cried.

We found a retired master carpenter on Craig's List that makes bunk beds to order. He had one already on hand and gave us a great deal. It was made out of fresh wood so I've been painting it the past few days in 115 degree heat.....not fun. The J man is so excited to have a whole new room. I will post pictures of the make over when it's complete.

Jalyn will have his sixth birthday party this weekend! He choose to have his closest friends over for pizza, popcorn, movie and slumber party! I'm trying my hand at a Mario cake......wish me luck!

I signed up for cake decorating classes today that start in August. I will be doing them with my dear friend Laura. We are both so excited to learn something new! Having some girl time is going to be so much fun and very much needed. Thank you to my awesome hubby who offered to watch our kids and Laura's daughter so we can do this together (her hubby works nights).

And Leila. It's been rough. Today I was told that she is struggling with PTSD (post traumatic stress disorder). Without going into detail, she has been exhibiting concerning behaviors that we have noticed. I met with her pediatrician today. He has extensive experience treating children who have been burned and have PTSD. We will continue to provide a loving and supportive environment. At some point we will start counseling with her. It has been and will be a long road, but if being loved unconditionally has any impact, we are certainly off to a good start. Her pediatrician was amazingly supportive today. He said "since the first time you showed me her picture I've loved her. Then you brought her in to meet me and I loved her even more. She is loved by a lot of people and that has the most impact on recovery." He reassured me that he will be there for us every step of the way and that his heart is truly with us on this journey. He said that what we have done and are doing is very admirable. That meant so much to me. Just knowing that your supported by family, friends and even your doctor makes the road ahead look a little less bumpy.

Sunday, July 12, 2009

Dreams Really Do Come True

Princess Belle was Leila's favorite. When we finished our meet and greet with the princesses we were shuffled into a shop of course. Leila took it upon herself to grab a Belle costume along with matching shoes, headpiece and wand. Tinkerbell wanted to keep Leila with her at Pixie Hollow for the entire day. Ummm no! I know she's the cutest thing ever but she's my little tinker bell.
Fawn loved Leila as well.
Celebrating Jalyn's sixth birthday with Patti Cake, Mickey and Minnie. We decorated cakes, sang, danced and had a great time.
Mommy's little pumkin poo. Notice the princess jewelry she purchased.
My little man isn't so little anymore. I have never in my life seen this child so happy. His face just lit up when a character signed his book. It was a smile we had never seen before. Worth every penny and then some.
Chip and Dale were the best! They loved the kids.
Kisses from Daddy.
Getting ready to go on Space Mountain.
As you can see, we decided to take our daughter with us. I did not regret that decision one bit. She had an absolute blast and did great! We were really blessed that our dear friend and the kid's nanny Laura and her daughter Brooklynn (Leila's BFF) were in Cali visiting her family. They were staying just fifteen minutes away from us. Laura and Brooklynn met us for fireworks one night, the kids thought it was so cool seeing each other on vacation! Laura also took Leila for one day and one night. We spent that day with Jalyn doing all things boy, and then Tariq and I went to California Adventure that night to ride the big coasters. Thank you so much Laura!!! We are so blessed to have you in our lives.
There is an end to everything in life. We had a great vacation and wouldn't change a thing. Seeing the kid's smiles was absolutely priceless.

Friday, July 10, 2009

All Good Things Must Come to an End

Tomorrow we leave the most magical place on earth.
We had a wonderful time.
Leila met all the princesses and loved it, Jalyn went on all the big kid rides. They got to eat with all kinds of characters. We celebrated Jalyns 6th birthday with Minnie and Mickey. What a great experience for the kids to have one on one time with them all.
I have to say, today we have spent most of our time at the hotel pool. I have not been this tired in a long time. We also received a call from our amazing house watchers back home that our pool is over flowing. A reminder that we do have a home and we do miss it.
It is time.
The pictures failed to load for this post, I'll have to retry when we return home.
Back to the desert and it's 115 degree days............

Saturday, July 4, 2009

Now Your My Whole Life

This morning I had music playing in my room as I was working on packing the entire family for Disneyland.
Leila came walking into the room during the last minute of a song and danced. She loves to dance.
As that song was fading, she walked over to me with her arms up in the air.
I knew what she was wanting.
She wanted a dance with Mama.
We waited for the new song to start.

Now, on my MP3 player I have lots of different music. Black Eyed Pea's, Poker Face, Flo Rider and numerous country songs. Whichever song came on we would dance, mother and daughter, fast or slow.

This is the song that came on.

I cried.

I couldn't help but think there was a higher power involved in this one.

I remember trying not to stare the first night I met you
You had me mesmerized
And three weeks later in the pale moon light taking 45 minutes just to say goodnight
I told you over and over again, I thought I loved you then

Now your my whole life
Now your my whole world
And I just can't believe the way I feel about you girl
Like a river meets a stream
Stronger than it's ever been
We've come so far since that day
And I thought I loved you then

I can just see you with a baby on the way
I can just see you when your hair is turning gray
What I can't see is how I'm ever gonna love you more
But I've said that before

Now your my whole life
Now your my whole world
And I just can't believe the way I feel about you girl
Like a river meets a stream
Stronger than it's ever been
We've come so far since that day
And I thought I loved you then

My precious baby girl, I love you so much.
Our bond has grown so much since the first day we met.
This picture was taken the day of her MRI, daddy took us out to dinner.
You ate and ate, we didn't know where you were putting it!
We found out yesterday that her MRI came back completely normal.
Unfortunately, Friday was considered a holiday so the doc didn't have her records with him. He asked that we call back Monday to review what this means and discuss where we go from here. Does this mean there could be other causes? Could she just have had a negative MRI but still have CP? We are left with more questions than answers now.
Brother and sister watching a movie together.
Leila holding my Ken Barbie doll from when I was little.
Both chowing on licorice.
What a bond these two share.

Friday, July 3, 2009

Break Out the Cartwheels

Blue Lilly's Coming to Town!!!

Yes ladies, you read it right!

Now that we have our date safely anchored down, I thought I'd start spreading the great news.

Wendy is a unique woman with an eye as sharp as they come.

She is the one responsible for the gazillions of family photos I have spread throughout this blog.

Sessions fill up quick!

So if you are interested, click here and sign on up.

We are changing the look of our family pictures up a bit and doing ours here this year.

In my opinion, the sites she has picked this year are the best EVAR!

Thursday, July 2, 2009

Warning: Construction Zone

There are some big changes going on in the Al-Mutawa household.
I had a visit with my new cardiologist, whom I love. My Mr. consulted with him when my grandma was so sick. First thing doc asked was "how's your grandma doing?" How amazing was that?
During my visit the doc explained to me how lucky I was to have recovered from PPCM. "Only 1/3 of my patients recover, in fact I have one patient that went against my advice and decided to attempt a second pregnancy. She is now in the ICU awaiting a heart transplant with two babies at home." Wow. I recovered. I'm blessed. I wanted a second child, I tried talking the Mr. into trying again even though I knew that meant possible death. I was desperate. I didn't feel my family was complete. I prayed for God to show me the road we were meant to travel and I would take His hand and place total faith in Him. Well we all know where that road lead, to the most beautiful little girl in the world.
The words I heard from doc was nothing I haven't heard before, but it hit me rather hard. It brought it all back for some reason. Just when you think you've grieved and moved on you realize your not quite over it.
Doc recommends a nuclear stress test to take a look at my ticker. He requested I come in today but we all know that was not possible. Sissy had her MRI. The test will have to wait until after Disney.
Meanwhile, I received a call today from another doc notifying me that I have Hypothyroidism. If untreated, your risk of heart attack doubles. Yikes.
Time for some major changes.
I read the obituaries daily. I watch the news/read the paper daily. While they are inspiring, I read blogs that center around tragedy.
Starting this morning, I decided to stop reading, stop seeking and to stop focusing on negatives. I have my own personal tragedy that I'm still trying to overcome, and that's enough on my plate for now.
I'm going back to work very part time. I'm at my happiest when I'm helping others through their time of need. I've missed my job tremendously and I'm excited to have some adult conversations again.
Starting August I will begin to take cake decorating courses to full fill a dream I've had for sometime. One of my all time goals would be to own my own cake decorating business out of my home.
The gym is back to being my new best friend.
In the past I've felt guilty over taking time to work out, leaving the kids in the gym daycare. Now I realize that getting healthy is not a luxury but a necessity.
Just having these new goals and a husband that supports them has made me feel like a whole new person.
What goals can you make for yourself today towards a happier, healthier you? Think about it and then join me!

Punkin Poo's Update

We are back home now and Leila did great!
They let me go back with her while they gave her the anesthesia via mask. When we walked in, the anesthesiologist held out her arms for Leila and she went right to her! She held Leila so gently in her lap, let her play with some toys attached to her name badge, held the mask near her face and sang Twinkle Twinkle in the most beautiful voice ever. It was such a calm, relaxing experience for Leila. She recognized all of the faces surrounding her and must have felt completely safe.
Off I went to the waiting room.
About 45 minutes later, the anesthesiologist came to get me. "Come on back", she said. "Leila did wonderfully. She's still sleeping, and it's best to let her sleep it off for as long as she will." As we turned the corner I saw my little girl being held ever so gently by one of my dearest friends, Kristy. What an awesome feeling knowing that my best friend was there to comfort my daughter until I got there.
Leila and I could not have asked for a better experience than that.
She is now sleeping soundly in her crib.
Thank you for your prayers, they were heard! We should find out the results tomorrow morning as the doc requested we call him directly to hear them.

Wednesday, July 1, 2009

Look At Me

This is her first pair of pig tails! Jalyn cracks up at that name "pig tails", he just thinks it's the funniest thing!.......boys!
She is now tall enough to open doors as you can see her proudly demonstrating below.
She also loves jewelry. Note she requested TWO bracelets today, one for each arm.
Having one of each is such a blessing.
Tomorrow is the big MRI day. We have to be up super early and Leila cannot eat or drink anything.

I will be sure to post that all went well as soon as I'm able.