PPCM Awareness Jewelry

So I finally have some bracelets made and listed in my shop.  I have had 3 sales so far and hope to have even more in the future.  The lovely ladies who purchased bracelets are some of my "Heart Sisters" and they very much like what they recieved.  I am so happy.  I plan on making and listing 10-15 more in the next month, if I am able.  Evan has been keeping me on my toes and so I really haven't had much time to do a whole lot.  He is rolling all over the place and enjoying every minute of it. :) 

http://www.etsy.com/shop/SimplyMeJewelryByAmy?section_id=10346725


That's about all the new stuff that I have for now, someone is waking up as I type for a midnight feeding...I think we might be having a MAJOR growth spurt. :)

~Good Night
~Sleep Tight
~Don't Let the Bed Bugs Bite. :)

So excited!

I am so excited!  I just printed out my application for the One Stop Shopping Night Craft and Etc. Sale in November.  I also just put in an order for some brand new jewelry making stuff at TWO different places.  I can't wait to get it in the mail so I can start working on my new jewelry collection.  This one is going to be called "Mothers With Heart".  It is dedicated to all the women out there who have been diagnosed with Peripartum/Postpartum Cardiomyopathy~My Heart Sisters. :)  It is a reminder of what we have gone through and what we go through every day.  I hope it will help bring more awareness to women (pregnant or not) who are of childbearing age of the dangers of this condition.  I will be the first person (I have searched and Googled and have come up with nobody thus far) to make beautiful jewelry to bring awareness to this illness.  It makes me feel good that I know first hand what other women are going through and that I may be able to help them to deal with PPCM in some way by providing awareness jewelry for them.  I am absolutely geeked to be the one who starts the trend and I hope that I am not the last. 

We don't have an official awareness color yet, but some of the ladies who were first diagnosed have used Mint Green as their color of choice since it is not currently being used for anything else.  I plan on using mint green beads, green crystals, with silver awareness ribbon charms or beads, silver spacer beads,  and a single red bead to signify our heart.  I plan on making a few different versions and I am beyond excited to start playing around with patterns. :)

 

 

Stay tuned for more information and for pictures of my new creations!

Echo Update...

So technically the Echo tech's couldn't "tell" me anything about my Ejection Fraction, and I was really disappointed.  I REALLY didn't want to wait until August 16th for my cardiologist to tell me whats up.  But...the technicians were super sweet and they said, "Well, we can't tell you NOT to look at the screen, and if per chance we 'accidentally' leave some numbers up for a minute, we can't do anything about it."  So, it looks like they are putting it in my records as being 40%. (Up from 25% at the end of March when I was diagnosed.) YAY!!!  It is such a relief to know that what I am doing is working and helping me to get better.  I am hoping that when I go for my 6 month echo, I get even better news.  :)  I am so happy that I finally have some answers.  Now I can go about my life and keep doing what I am doing knowing that it is all ok. :)

Today is the day...

Today I woke up early (if you call 8:30 early).  I am by myself enjoing the quiet, it is weird though, having "me time".  I can hear Evan starting to stir in his sleep...I wonder if he can tell when I am awake...In the quiet hours of the morning I am trying to ready myself for the events of the day.  I wanted to sleep in, but have too much on my mind for that. So, I am up and awake and ready for the day...

We leave for Houghton Lake for a week on Saturday morning and I couldn't be more excited.  We will be spending it with my mom and dad~like we do every year...but next year I think we will get our own cabin-we are outgrowing theirs :) We have needed a vacation...Aaron has needed a vacation and is extremely deserving of it for all of his hard work in the past 4 months.  We are going to be out and about getting last minute things ready for our travels and time away from home.  Most importantly, FISHING LICENCES!!! It is pretty much the only time of year that I fish, but it is a great way for me to spend time with my dad, and I am pretty good at if I do say so myself~pictures to come later of my big catch.  :)

I am so nervous.  I could hardly sleep last night and when I finally did fall asleep, I woke up every few hours, WIDE awake.  Today is also the day of my 3 month echocardiogram, even though it is closer to 4 months after my diagnosis.  I won't see my cardiologist to discuss the results until the middle of next month.  I am hoping that the echo tech will be able to let me know at least what my ejection fraction is`how well my heart is pumping.  I have been doing extremely good at following my diet and fluid restrictions, and I ALWAYS remember to take my medication.  I know that I am feeling good, and that SHOULD be all that matters...BUT I really want physical proof that I am doing well and on my way to recovery.  The only way for me to know that for sure is to see it for myself on the echo and for the tech to tell me what my EF is.  We shall see.  I will post an update later.  For now, I will just try to relax, maybe do a puzzle on Jigzone, and wait for my Dad to arrive to watch Evan while Aaron and I head off to Sparrow. 

Wish me Luck! :)

Hope

I have been having a hard time lately.  I have felt extremely overwhelmed at times and feel like every little twinge of pain means that there is something wrong with me.  I often think that I am relapsing or that I am not getting any better.  I worry that I am just not working hard enough to help my heart get better.  I know that I am trying, Aaron and I are both working very hard to make sure I stick to my diet, and I am well within my limitations.  I am proud of myself for how much I have done and how much I have had to change in such a short period of time.  I am lucky to have a husband who is so willing to change too so that I don't feel left out.  Not many people would do that for their spouse.  Yet every day I worry and get scared for no reason.  I thought I was doing so well, but when it comes down to it, I am nothing but a hot mess. 
A few days ago, my mom gave me a special card, she is always looking for cutesy stuff like that for us girls.  I hat to admit it, but I love the crazy little things she finds. :)  This particular card had a picture of some calla lillies and the word HOPE on the front.  On the back is a great verse from Jeremiah.  What was interesting about this card is that I had just seen a rubber stamp @ Hobby Lobby with the same word, and verse on it.  I wanted to remember it so I took a picture of it on my phone.  I thought it was interesting that of all of the cutesy stuff that my mom likes to buy, she chose this specific one for me.  How ironic...

"For surely I know the plans I have for you, says the LORD, plans for your welfare and not for harm, to give you a future with hope.  Then when you call upon me and come pray to me, I will hear you.  When you search for me, you will find me; if you seek me with all your heart..."  Jeremiah 29:11-13

I love this verse.  It makes me think of all of the ladies, my "heart sisters" who are there for me and offer guidance and hope for a better future, who let me know that it is going to be OK and that everything that I am feeling, they have felt too and it WILL get better.  I know that God does have a special plan for me, he definitely isn't ready for me yet.  I have a lot more work to do here before I go, so I don't plan on leaving any time soon.  I also know that the Lord will give me no more than what I can handle...I just wish sometimes that he didn't have such high expectations of me. :)

It's been a while...

     It has been a while since I posted anything, so I decided I should try while Evan is content at the moment.  To fill you all in on the goings on lately, I will start with the beginning of May.  Evan had his very first sleepover (on purpose) with my mom and dad so Aaron and I could get a good nights sleep.  It was weird.  I missed Evan, but knew that I needed the sleep.  I had my very first Mother's Day.  It was nice.  Aaron and I stayed at home for dinner, it is just easier for me to cook because of my special diet.  We watched some movies and I think I even went to bed early. :) 
     I am still doing well with my diet, fluid restriction and remembering to take my medications.  My blood pressure is where it should be, and I am maintaining my weight.  I really have been doing well, but the other day something happened. All of a sudden I didn't feel right.  I got a little light headed and dizzy, so I took my nighttime medication since it was time, and I checked my blood pressure.  It was elevated and so was my pulse. I sat down and tried to focus my breathing hoping it would help.  I was scared. I thought I was having a relapse.  I called the cardiologist who was on-call and he said it wouldn't be a bad idea to go to the ER and get checked out.  It is amazing how fast you get seen in the ER when you have a heart condition.  We waited 2 minutes at the most and the waiting room was PACKED.  After tests and chest x-rays, and blood-work, and seeing a few doctors, I was released.  It was deduced that I was having a bit of an anxiety attack.  They gave me some Ativan and sent me home.  I don't know if it worked that night, because by the time we got home, it was 3 am, so I slept like a baby regardless of what they gave me.  Plus, my mom and dad too Evan home with them for the night so he didn't have to stay in the hospital with us. I was given a small Rx for Ativan, but I can only take it at bedtime since it makes me sleepy.  I have an appointment with my regular Doctor tomorrow afternoon to follow up.  I am hoping she gives me something that I can take for this anxiety that won't hinder my ability to function and be a mom.  We'll see how it goes. :)

The Next Chapter

   My prayers were answered that Tuesday morning, and I was so wrong about what I was actually capable of doing. Aaron went back to work a few weeks ago and it is finally starting to feel like we are a real family.   I am a fully functioning member of society.  I can take care of Evan better than anyone else in the world can.  I am eating healthier because of my heart condition and am monitoring myself well.  It has been 1 month since our nightmare ended and I was released from the hospital. It's been an interesting ride to say the least.  I have an appointment to see the cardiologist in a few weeks to see how I am doing.  I hope he decides to do some tests to see how well my heart is now.  It will be nice to see if my hard work has paid off. :) 

     Evan is doing great. He is growing like a weed and changing every single day.  I have decided to take a picture of him every day until he is a year old.  I wanted to take pictures so I don't miss out on anything. We went to the orthopedic surgeon @ U of M the other day and she says that Evan is just fine.  As of right now he does NOT need surgery on his legs.  We couldn't be happier.  She doesn't deal with  the cosmetic part of ABS, so she is referring us to a hand surgeon that she works with to check out his hand.   Now we are just waiting for their phone call.




One day old




Two weeks old




Almost 6 weeks old


  

Going Home

     All I wanted was to go home.  I missed my baby and I missed my husband.  I wanted get home so I could finish unpacking and organizing our new place. I wanted to start being a real family in our new home.  I was tired of being hooked up to IVs.   One of the medications that I was on was a diuretic that was used to help get rid of the extra fluid in my body.  It drained 20+ pounds from my body in a very short amount of time.  I literally felt drained.  My muscles were weak, my bones hurt, and my skin felt floppy.  My arms were sore from all of the blood draws and IV lines.  I wanted so desperately to take a shower and scrub off all the yuck from the adhesive stickies they used to monitor me.  I just wanted to put on some of my own clean jammies. 

     After several days of terrible news, I received the best news ever on Tuesday.  My cardiologist came to see me in the morning and told me that if my blood tests came back the way he wanted them too, I would get to go home.  Finally after what seemed like an eternity, my nurse came in and said it was time to pack up.  It took a little while to get discharged.  They had to give me all kinds of information for me to read about heart health that I had to take home.  They gave me orders to monitor my weight, blood pressure, and diet on a daily basis.  I also was given all kinds of prescriptions that I had to take.  By early afternoon, I was being wheeled towards the EXIT.  I was finally going home.  I was a little nervous.  It was a bit surreal.  I had wanted to go home so bad but now that I was in the car on my way to see my family, I was unsure if I was ready.  I was scared that I wouldn't be able to take care of Evan well enough.  I was afraid that I wasn't strong enough. 

     When I got home, I was greeted with flashes of light.  My family was there to welcome me home.  It was a such a warm reception.  Many surprises awaited me.  Sometime while I was in the hospital, my brother in-law and some friends of ours took it upon themselves to help unpack our apartment and move in new furniture for us.  I couldn't believe my eyes.  I also was surprised to see a brand new bed and box spring courtesy of my God parents and Aunt and Uncle.  I was beyond grateful.  I never really knew how much I meant to people.  It was nice to finally be home.  I was so glad that my family was there to share in my homecoming. I am so thankful for them and all of our friends who were there for Aaron and Evan while I was away.  Thank you, you know who you are.  :)

When my world fell apart...

     I felt so alone. I needed to be with my husband and I needed to be with my baby.  I just wanted to go home.  I was uncomfortable and afraid.  I was on so much nitroglycerin that I got migraines.  I have never had one before, and hope to never have one again. They had to gave me morphine to relieve the pain.  I slept for a few hours at a time, but as soon as I woke up, the migraines returned.  They would give me more morphine and I would go back to sleep.  I had to get my blood drawn 2-3 times a day, even when I was sleeping.  I was still on oxygen and I was getting my blood pressure checked every 15 minutes.  It was still fairly high, so they couldn't take me off any of the medication or IVs.  I had a lot of visitors.  My Aunts and Uncle drove through the night and into the wee hours of the morning to come see me and Evan.  It was so nice of them to want to be there for us, and for the rest of my family too. 

     I felt like the main attraction in a circus.  There were tons of new doctors coming in to see me all the time, OBs, General Docs, Interns, and Cardiologists.  Everyone asked the same questions.  They all wanted to listen to my heart and my lungs.  Not one of them came to see me more than once.  It was just annoying.  I was tired of being hooked up to machines.  I felt like they a pincushion. I was bored and exhausted and just wanted to go home and be a new family with Aaron and Evan.  After my blood pressure had gone down a little, and I wasn't on as much nitroglycerin, I was finally able to get out of my bed and sit in a chair.  Then a new Cardiologist, Dr. Yoo, came in and explained what needed to happen in order for me to be healthy enough to go home.  I was NOT prepared for what came out of his mouth.  He told me that I would NOT be able to breastfeed Evan when I went home because I would be on medication for a long time,  I started to cry.  He then proceeded to tell me that I shouldn't have any more children because I would have a relapse and it would probably kill me.  I was crushed.  I hadn't even had a chance to enjoy being a new mom to Evan and do the things I had planned because I was stuck in the hospital.  They were telling me that I wouldn't EVER have the chance to do those things.  I felt like my whole world was falling apart.  Dr. Yoo said that it was extremely important not to put any extra stress on my heart and that my blood pressure needed to go down before we could even think about going home.  How in the hell is my blood pressure supposed to go down when they deliver such awful news?!?!  I cried for hours and I REALLY wanted to go home and hold Evan and squeeze him and kiss him and love him as much as I could.  Aaron was really upset. He was told the day before and had requested that HE be the one to break the news to me, gently, at a later time. 

     On Friday, Evan was discharged.  He was being well taken care of at my mom and dad's house with all of the Aunties and Uncles there.  I was sad that I couldn't be with him, but I knew that I needed to stay at the hospital so I could get well so I would be able to take care of him. 

   When my blood pressure started to go down, they lowered the nitroglycerin and my headaches finally went away.  At one point, my blood pressure got so low that I almost passed out.  I found out later that they kind of expected it because they had to try and figure out how much medication it would take to lower it.  Well, I found out the hard way.  It happened 2 more times before they finally adjusted it to where it needed to be.
 
     On Saturday, I was moved to the Cardiac Care Unit.  I was still on IVs and oxygen, but I didn't have the blood pressure cuff or the monitor anymore.  I was able to get up and walk around and sit in a chair.  It was nice.  I was still sad that I had to be there and miss out on many of Evan's firsts.  Aaron stayed the night with me and I was so glad that I cried.  I had felt so alone, even with all of the visitors.  On Sunday, Aaron went to stay with my mom and dad so he could be with Evan.  I was all alone again, and cried some more, but I had a surprise coming and I was very excited.

     On Monday, Aaron brought Evan to see me.  I was so happy I cried...again.  I hadn't seen him in a few days and he looked like a whole new baby.  He wasn't yellow anymore, but that wasn't what was different.  He was growing and changing and I felt like I was missing it.  I was angry that I couldn't leave.  I was however very grateful that the nurses had pushed for me to have a private room so I could spend as much time with Evan as I wanted. :)

     I was so glad that I was able to spend time with Evan, but I think that being away from him made me appreciate him more.  Not being with him made me realize how much of a blessing he is.  I don't take anything he does for granted.  I am so glad that I have the opportunity to be his mommy.

I have what?!

     After a few hours of being poked and prodded, the cardiologist came in and explained what was going on and what they needed to do.  I was finally told what was wrong with me.  I was in congestive heart failure due to Postpartum Cardiomyopathy.  My lungs were completely filled with fluid because my heart was so weak it couldn't pump properly.  It was causing the extra fluid in my body to build up around my heart and get backed up into my lungs.  That was why I couldn't breathe when I laid down and why my blood pressure was so high. 

"Postpartum Cardiomyopathy (PPCM) is a form of dilated cardiomyopathy that is defined as deterioration in cardiac function, presenting typically between the last month of pregnancy and up to five months postpartum.  As with other forms of dilated cardiomyopathy,  PPCM involves systolic dysfunction of the heart with a decrease of the left ventricular ejection fraction (EF) with associated congestive heart failure and an increased risk of atrial and ventricular arrhythmia, thromboembolic events (blockage of a blood vessel by a blood clot), and even sudden cardiac death.  In essence, the heart is weakened and does not pump sufficiently for the needs of the body.

     PPCM is a diagnosis of exclusion, wherein patients have no prior history of heart disease and there are no other known possible causes of heart failure.  Echo cardiogram is used to both diagnose and monitor the effectiveness of treatment for PPCM."

 I was told that I couldn't breastfeed Evan because the medications I needed would leach into the milk and make him sick.  I was sad, but they said that I could pump and dump so that when I went home and was off the medication, I would be able to breastfeed again.  My mom figured that the breast milk I had pumped earlier wouldn't last too long, so she had already taken care of getting some formula so Evan could eat.  He was already getting used to it by the time he was admitted for his jaundice, so I wasn't too worried.   They administered an obscene amount of nitroglycerin to try and lower my blood pressure and a blood thinner so my already weak heart didn't have to work so hard to pump my blood.  I was also put on a diuretic to get rid of the extra fluid in my body.  I was still on oxygen, but was finally able to be put on the nose hose instead of the C-pap. Yay!  After a few hours, they moved me to the Intensive Care Unit which I would learn to call home for the next few days...