Sofian Family Update!

Sorry for not updating in a while. Our laptop bit the dust and we haven't been able to replace it iust yet. Aaron and I both upgraded our phones, so here I am being all tech savvy and posting this from my new Android phone.  :)

We are all doing well and anxious for the holidays.  Aaron is currently in training to be an assistant store manager. He has been away  in training for 4 weeks. He is able to come home on the weekends so we are lucky to be able to spend some time with him. We miss him but are excited for what is in store for our little family.  :) His new position is in Big Rapids so we are looking for housing but not in too much of a rush because our lease here in Lansing isn't up until February. 

Evan is crawling all over the place and even trying to climb too.  He is wonderful and I praise God every day for allowing me to witness his remarkable growth. :)  He has 4 teeth already, 2 on top and 2 on the bottom. There is one more on top that is trying to make its grand entrance...which is making for a fussy unhappy little bubby at times, but we are working through it. :)

I am participating in Etsy's Black Friday and Cyber Monday sale this year so if you are interested, check out my shop for some great deals and FREE SHIPPING!!! I hope you all have a wonderful and blessed Thanksgiving!
Http://www.simplymejewelrybyamy.etsy.com

Avocados!!

So we decided to try avocados for dinner the other night and Aaron took this video for us to show everyone what Evan thought about them.  We tried them again last night and had the same reaction so we have decided to wait a few days and then we will be trying the sweet potatoes.  Evan is such a character.  Enjoy the video. :) 

PS.  Evan is officially 6 months old as of yesterday and today I discovered he has a tooth popping through.  My baby boy is growing up so fast!

Rolly Polly

Evan is rolling ALL over the place and I am loving EVERY minute of it. He is so fun to watch. He reaches for everything and loves getting into "trouble" as he tips over baskets.  He is so cute when he tips his toy basket and digs his toys out to play with. I am enjoying him at each and every step of his development.  On Monday Evan will be 6 months old and we are looking forward to starting him on solid foods. Monday for dinner we will be trying sweet potatoes and I can't wait to try out my new food mill. :)
We will be doing avocados too and then maybe bananas. Wish us luck. :)

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!

A Day to remember...

Yesterday we went to Domino Farms in Ann Arbor to meet with Evan's hand surgeon.  FINALLY!  It was a nice ride there but I was a bit anxious.  I tried to keep the conversation light, so Aaron and I talked about all kinds of things, the weather, work, possibly looking at buying a house in the spring, etc.  Before I knew it, we were there.  I'm not exactly sure what else they do there, but I saw all kinds of animals as we pulled into the parking lot.  There were long horned bulls, striped cows from Scotland, and even some alpacas.  It was neat see them all grazing all around the building.  I wish I had taken my camera, I definitely will next time we go there.  The wait wasn't too long.  We got some x-rays and then we waited a bit more.  When we went in to see the doctor, the nurse was super nice.  She took a look at Evan's hand and said, "Oh, that's not too bad."  She said that they see cases like Evan's at least once a month.  That made me less nervous just knowing that Evan wouldn't be a first for them.  The PA came in first and then went to get the doctor.  When Dr. Chung came in he was very serious looking.  He asked some questions and took a look at Evan's hand.  He said it wasn't too bad, but it WAS going to be tricky to fix due to the location of the bands.  He said that we will wait until Evan is a few months older before we do his first surgery, there will be more to come as he grows.  When we do, he will have the band on his left leg released, some of the bands on his hand, and also the band on his right big toe.  Then someone came in to take photographs of Evan's hand so the Dr. can take a look and figure out what exactly he will have to do to repair Evan's fingers.  I am NOT looking forward to ANY of these surgeries, but I know that they are necessary to keep Evan growing and developing the right way.  I am nervous and a bit scared of what the recovery will entail on my part. I am not sure what to expect as far as the healing process and what we will need to do to take care of Evan properly so he heals the best he can.  It will definitely be interesting to say the least.  I will update more as we get more information, right now it is just waiting for them to schedule the surgery, it should be in November or December.



Alpacas~Taken with my phone

When we left the building and walked to our car, this is what we saw.  The alpacas had made their way to our side of the building and were grazing on the hill right in front of where we were parked.  It was kinda cool. :)

Love is...

I stood there in a tanktop and pajama shorts that had been worn for one too many days with spit-up dripping from my shoulder to my backside.  I hadn't showered in days.  We swayed back and forth, dancing to the soft melodies that came from the CD player.  A memorable song from my own childhood was playing, "True Colors" by Phil Collins in the form of a quiet lullaby just soothing enough to lull my little one to sleep.  I looked down at his round sweet face and whispered in his ear, "You are perfect",  "You are wonderful."  I make sure to tell him this every chance I get.  I kiss the top of his head and feel his fluffy blonde hair on my lips.   I remembered back to just 4 short months before when I first laid eyes on him and I began to weep.  His hair was darker and fuzzier.  He was so small and fragile and dependent upon me for everything he would ever need.  I never knew it would become something so much more than just being a mommy.  I never expected to feel this way.  I never expected to be so overcome with emotions, some new, some old.    I had finally figured out exactly what unconditional love really is.  To me it means that I would walk to the ends of the Earth for this sweet boy.  I have been to Heaven and Hell for him already and would do it again in a heartbeat.  When I met my husband I understood love, but I never thought I would ever feel THIS type of love for another human being.  It is more different than any other feeling I have ever had.  It is an all encompassing feeling that takes over my entire being.  I feel beyond blessed to be able to experience all of this and to have Evan in my life.

When I tell him I love him

it is more than just words,

it is my life,

my heart,

my soul.

He's off and Rolling!!!

Yesterday morning Evan and I were hanging out just like we always do.  It was a normal day pretty much like any other.  He was hanging out  on his activity gym enjoying the rings and rattling things that were dangling above his head while I was doing some much needed emailing and catching up after being away from home for a week.  I decided that it was time for me to eat breakfast and take my meds while he was content and not really needing my undivided attention.  I walked into the kitchen to make a bagel and grab some juice.  While my bagel was toasting, I peeked back into the living room to see the most AMAZING thing before my very eyes.


When I left him this is what he was doing...

But when I returned, THIS is what I found...

After Evan showed me his wonderful new trick, he proceeded to spit-up all over himself because he had eaten a short while before rolling onto his tummy.  When Evan was all cleaned up he decided that he would let me record his new fun trick, in case he wouldn't do it on command when his daddy got home from work.  I didn't really need to.  He has been off and rolling ever since yesterday morning.  It's kinda funny how he used to HATE it when I put him on his belly for tummy time, but now he can't get enough of it. :)   He even tries to roll while he's buckled into his bouncy seat. Lol. 

  I am so excited that he is advancing developmentally pretty much right on schedule, but I am sad that he is growing up way too fast.  I am definitely enjoying watching him grow and learn new things and I am making sure to document each and every move he makes. :)

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! :)

Off to Dream Land...

I have always been one of those people who looked at other parents and said, "When I have kids I'm not gonna do that."  I will never again say that.  I HAVE done that...I have done all the things that I said I wouldn't do when I became a parent.  I think that it is easy for people who have never had children to judge or decide to do things differently.  Until you have the experience of bringing life into this world, you have NO idea what you will or will not do.  I always said that I wouldn't hold my baby all day long, yet I find that my arms ache when Evan is not in them.  I always said that my baby would NEVER sleep in my bed because it would interfere with the intimacy of my marriage, yet I wake up in the middle of the night just waiting for Evan to cry so I can run to him and bring him back to bed with me.  He has had a rough time sleeping, pretty much since he was born, and we have had to make some adjustments to our thoughts and feelings of how we had wanted his sleep habits to work.  From 0-3 months old, Evan had an infant startle reflex that would cause him to wake himself up if his arms were loose.  He would only sleep in his bed if he were swaddled and napped in my arms during the day.  When he grew too big for the sleep-sac with the swaddle wrap, we referred to our midwives who make GIANT swaddle blankets...They saved our sanity.  When he outgrew those, or it was too hot to swaddle, I would bring him to bed with me and we would fall asleep together.  Then I would wake up and put him in his own bed for the night.  My body ached from sleeping so stiffly while he was in our bed.  Thankfully, that didn't last very long.  Recently, Evan has begun sleeping by himself, in his own bed, WITHOUT being swaddled.  He is of course still rocked/held until he falls asleep, but he stays asleep in bed ALL night long! Yay!  I am so excited because now he can wear all of his cute sleepers and sleep-sacks.  He has a TON and now we can actually use them. :)  Here are a few pictures of our little guy in his sleepwear and on his way to dreamland...

Mommy wanted to snuggle in her bed!

Sleeping soundly...

Getting ready for bed...but I'm WIDE awake!

Look at me sleeping so peacefully in my cute sleep gown!
(I think I'm going to be a side sleeper when I get older.)

Feeling pretty good...

     So I was feeling pretty crappy for the last month or so.  My nerves were a  bit on the high side and it made me feel anxious.  After going to the doctor last week I discovered that I really do have anxiety.  So I have been taking medication for it and after just one week of it, I feel amazing.  I haven't felt this good since before I gave birth to Evan.  I am not all about taking medication, but man does this stuff really work.  I don't feel scared or nervous anymore.  I feel more alert and aware of what is going on.  I really think that I am just functioning better in general.  It makes me happy that I am feeling well enough to be the great mom that I always knew I would be.  I wake up in the middle of the night to feed Evan and I am actually able to stay awake to feed him and interact with him while he is eating.  I wake up in the morning with a smile and look forward to the day that is awaiting Evan and I.  I have a whole new outlook on my future and the future of my family.  I have a renewed sense of self and my place in this world.  I realize now that my anxiety was being masked and that I have had it for a while but I was on such a "baby high" for the first couple of months that it just finally started showing itself.  I am glad that I have such a great support system, my family is the best.  I couldn't have gotten through these past 3 months without them.  I am so excited for what is in store for my family and I can't wait for all of the memories we are going to make. :) 

     On a totally different note...My baby sister is getting MARRIED tomorrow!  I couldn't be happier for her.  We have been waiting for this day for her for a long time.  Now that it is finally upon us, it is a bit surreal. :) I wish Andrea and Joe all the best.  May you have many wonder-filled years together! :) I love you both! :)

We're growing bigger every day!

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. :)

A good day gets even better

So today was a pretty good day.  Evan is having yet another growth spurt, he & I are trying to figure out just how much he wants to eat.  We tried 4-6 oz every 4-6 hours, a few weeks ago, but he was constantly spitting up so we had to cut back.  Then,  he was eating 4 oz every 3-4 hours and that was fine.  Now he's wanting  4 oz every 2-3 hours.  I don't mind that kind of schedule since I am at home with him during the day, but it has totally thrown off his sleeping schedule.  He was sleeping 5-6 hours every night and would wake up, eat,  and then go back to sleep.  Now he eats, and wants to stay up for a while, THEN go back to sleep.  Today I decided that since it seemed like he was hungry ALL THE TIME, it might be a good idea to try and give him a little bit more than 4 oz.  He a really happy guy after that.  He was awake and alert and was really having fun.  He even giggled at me and Aaron for the very first time!  He is amazing!  Anywho, he ate 6 oz  about 2 hours ago, and NO spit-up whatsoever! Yay.  Maybe we can keep this up and he will go back to sleeping through the night again.  That would be awful nice of him.  :)

Been a while...

It has been a while since I have posted something and I have a minute to myself.  I figured I should write while I have the opportunity.  This post is about me and how I have been feeling the past few weeks.  I'm not sure if it has anything to do with hormones or not, but this is just how I feel.

I’m just so Tired…

Tired of being tired

Tired of being sad

Tired of being scared

Tired of feeling bad

Tired of being a burden

Tired of being alone

Tired of all the pain

Tired of the unknown

Tired of being angry

Tired of being nervous

Tired of being doubtful

Tired of feeling worthless

Tired of being weary

Tired of being unhappy

Tired of being fearful

Tired of feeling sorry

Tired of being a hassle

Tired of feeling lonesome

Tired of that constant ache

Tired of my future and what may never come

Tired of being frustrated

Tired of feeling edgy

Tired of being uncertain

Tired of feeling empty

And tired that I won’t ever be,

Just plain old ME…

Not-so-happy camper...

     So, Tuesday I had an appointment with the cardiologist.  I had a huge list of questions for him and I was hoping to get some positive answers.  I just wanted to know that I could do "normal" stuff again.  I was none too enthused when he crushed my hopes of getting better soon.  He was also very cold and not too optimistic about my approach to natural healing.  I want to go to the chiropractor, he said, "That doesn't really work.  It's only psychological."  I wanted to start taking some supplements.  He said "They won't work, it's a waste of money".  I have been wanting a new tattoo for more than 5 years now, and I have found the perfect design that represents me and the struggles that I have been through in the last few months. He said, "I wouldn't recommend it."  (I think that was more of a personal preference on his part and not so much a medical reason.)  He also said that I needed to stop eating so much broccoli because it is screwing up the results of my blood tests (it has to do with the Coumadin that I am on). That stinks because the only thing that tastes good without salt is COOKED BROCCOLI! Did he offer a solution to my predicament? Nope.  He just said either to eat it EVERY single day, or not at all.  I understand why, but I don't get why he didn't suggest something for a compromise.  :(

     I was fairly angry with him at this point, but got plain ol' pissed off when he made his next comment.  He asked me if I was breastfeeding!  I almost fell out of my chair.  Did he completely forget that he was the one who told me NOT to breastfeed Evan when I went home from the hospital?!?!  Did he forget that HE said that the medications I would be on would leach into the breast milk and make Evan sick?!?!  I was so angry!  HE was the one who prescribed the meds!!!!  Was he saying what I think he was saying?, that I COULD have breastfed Evan when I was released?  Why didn't he tell me that, why didn't anybody tell me it was OK????  :(  I can't believe he let me pump and dump and get Evan all situated with formula when I could have been giving my son the best nourishment possible this whole time! 

     As I waited for more unwanted words to come out of his mouth, I sat and thought for a minute that maybe I needed to find a new cardiologist.  I need someone who is going to be on the same wavelength with me, or rather someone who I wouldn't mind being on the same wavelength with.  I wouldn't mind one who is female who would be better able to answer my female questions.  And I wouldn't mind one who would be more open to "natural" healing and such.  I needed someone who was going to be more in tune to my thoughts and feelings about this whole condition and new lifestyle.

     After what seemed like an hour of wasting my breath asking questions that he seemed to not really want to answer, the cardiologist said he was adding ANOTHER medication (to my already long list of drugs!) since I WASN'T breastfeeding of course.  He said that it is supposed to help keep my blood pressure low since it had been a bit high. I am already taking one that helps lower it so I am not quite sure why he wants me to take another one, but I guess since I'm not the doctor I don't have much say in the matter.  I discovered, however, that after taking it just once that it makes my blood pressure drop way down, 88-99 over 65-70.  The last time my BP was that low was when I was in the ICU and it made me dizzy and I almost passed out.  It worries me a bit.  I can't be on a medication that might potentially make me pass out.  Especially when I am the sole caregiver for Evan during the day. I think that it just makes me nervous.  And I really don't need ANY other stuff added to my list of things that make me nervous or anxious right now. 

     I go back to see the cardiologist in a month, so we'll see what happens then.

New Blog

I decided to start a new blog in the hopes of helping other people who may be in a situation similar to mine.  It is still under a bit of construction, but I do have some helpful information posted in the mean time. :)  Enjoy!

http://tastes-like-cardboard.blogspot.com/

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. :)

An End to a Beginning...

     I believe that God will only give me what I can handle and no more.  I think that I have handled all that He has given me, the best I can.  I am sticking to my nutritional guidelines. (I have had enough of writing down every little thing that I put in my mouth!)  I am attempting to exercise.  (Its kind of hard with a newborn, but we're trying to get the hang of the Moby wrap.) All the while, I'm trying my hardest to be a great mom.  I am just 6 weeks post-partum, so I would have to say that I am doing quite well under the circumstances.  Evan and I are trying to get ourselves into a daily routine.  I tend to mess it up sometimes when I pick him up while he's sleeping.  I just I feel the need to be close to him.  I still can't believe that God allows us to make such amazing creatures, and he even let me keep just the perfect one for our family.  It has definitely been an emotional roller coaster for us, to say the least, but I just keep smiling and try to be a good wife and mom.

     I am ever so grateful for all that I have.  I have a beautiful baby boy who already has the most gentle soul.  I have an amazing husband who is willing to do anything for his family.  I have a loving and caring family who I wouldn't trade for the world.  Even though I have all of this, I still find myself somewhat resentful.  I get angry that so many women out there can have all the babies they want, yet they take it and their children for granted.  So many women don't enjoy the time they spend growing their child within their womb.  I miss that part the most I think.  The ability to feed and grow another human life, knowing that you are the sole provider for all of their needs and that you are their ultimate protector.  I cried when I came home from the hospital and had to put away all of my maternity clothes, some of which were almost brand new.  I had lost so much weight that I was able to fit into my pre-pregnancy clothes already. I weigh less now than I did BEFORE I got pregnant with Evan. Aaron tried to help by saying how much fun it would be to go shopping and get new clothes for myself now that I was smaller.  For a lot of women, they can't wait to get their old shape back.  For me, I wish I was still big and fat with a post-baby belly.  I put my favorite outfits into a container and put them in storage along with my hopes and dreams of ever being able to wear them again.    I didn't really think much of it after that.  I was trying to get on with my life.  I was happy being a mommy and I was busy doing mommy and Evan things.

     I had a bittersweet moment earlier today though while I was putting away Evan's clean clothes.  I realized that some of them were NOT going to fit him anymore. We were worried  at his last Dr. appointment that he wasn't quite growing enough.  We really shouldn't have been worried.  I had no idea how fast he would grow.  He has gained 2 pounds since his 1 month check-up, and is now in size 1 diapers.  We are so happy that he is growing and doing well. He has outgrown most of his newborn clothes.  A lot of them were in the wash when we had to switch to the 0-3 month clothes.  As I was setting them aside from the rest of the clothes, I stopped for a minute and imagined Evan wearing them just a short week before.  I remembered having to go out and buy newborn stuff when he was born because he was just too small for all of the things we had for him to wear.  He was so itty bitty.  His tiny little hands and feet.  His skinny little arms and legs.  I had a hot flash, and a wave of nausea rolled over me.  I literally felt sick to my stomach.  It had finally hit me...I'm not going to be pregnant again.  I won't be able to feel the most amazing feeling of kicking and moving inside of me.  I won't feel the joy of bringing another life into this world.  I had wanted so badly to have a big family and I had such an amazing birth experience with Evan.  The thought NEVER occurred to me that it might just be the three of us.  I felt cheated.  I cried.  I cried hard and held Evan close so I could smell him and lavish him with kisses.  And then I cried some more.  I will probably continue crying every time Evan outgrows another batch of clothes, or when he starts to crawl, or walk or do anything for the first time.  I guess it is all just part of the healing process for me.

     I AM grateful.  No, I am more than grateful.  I am beyond blessed that God has given me the greatest gift He could possibly give someone.  He has bestowed upon me, the gift of Motherhood.  I couldn't have asked for anything more special than the honor of raising a child.  I have the opportunity to share my love with another human being in a way that I never thought was possible.  I  have the privilege to share with Evan all the wonders of the world and so much more.  I can only hope that someday I will be well enough to share my love with another child.   If that doesn't happen, I will still cherish every single moment that I am able spend with Evan, for the rest of my life.

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...

What's happening to me?!

     By Thursday, I was still short of breath but was finally able to catch a cat-nap once in a while.  The inhaler wasn't helping at all, all it did was make me jittery.  I still had a wheeze that kept me from sleeping, and I still felt like if I laid down that I would stop breathing and die.  My sister Andrea decided that it was her turn to stay with us.  She was amazing.  She took it upon herself to not only help take care of Evan, but she took care of me as well.  I am forever in debt to her everyone else who was able to be there, for taking the time to make sure we were taken care of.  I decided that since Evan was in good hands (Daddy's AND Aunt Andrea's), that it would be a good idea for me to take a shower and get the rest of the sticky adhesive residue from my trip to the ER off my skin before it gave me a rash.  It was lovely.  The steam even helped to clear my lungs a bit. 

     After my shower, Andrea suggested we play "photo shoot" with Evan so we could finally get some pictures up on Facebook for everyone to see. After she took a few, I decided that it would be nice to wash Evan up a little first so he would look his handsomest.  While we were giving him his little washcloth bath, I began feeling a little light-headed and I started having shortness of breath again.  My legs were really weak and I started to feel a bit funny. It was kind of weird because I have never passed out before, but it kind of felt like I was going to. Andrea finished getting Evan all dressed and I went to the living room to sit down.  

     After sitting down for a while, my breathing began getting worse and I started to cough. All of a sudden I began coughing up orange goo.  It was awful.  I had no idea what was going on.  At first I thought I was just panicking and hyperventilating.  I asked Andrea to look up online what to do if you hyperventilate.  She called my mom to see if she knew what to do.  I began coughing harder and I really couldn't catch my breath.  I was terrified.  I told Aaron that we needed to call 911 because something was seriously wrong.  I told the paramedics all about what had been going on so they knew about my hospital stay and what the doctors had thought was going on.  They checked my blood pressure and listened to my lungs.  My BP was 200ish over120ish and they said that my lungs sounded "wet".  They checked my oxygen level, it was 85%.  Normally, it should be above 95%.  They started me on oxygen immediately.  At this point I was still panicking, but Shelly, the lady paramedic, was very sweet and was helping me try to calm down.  They put me in the ambulance and Aaron rode in the front.  Andrea told my mom what was going on and she took Evan and hopped in her car.  Thank God she was there that day.  Shelly, put an IV in and we drove to Sparrow Hospital  Halfway there, my oxygen level started to go down.  Shelly said that it would be a good idea to put the oxygen mask on instead of the one that was up my nose.  I was so scared.  When we got to the ER, my dad was there waiting for us and my mom was on her way.  Andrea would be there shortly with Evan. 

  I was taken to a room while Aaron gave the intake person all of my information.  I was scared.  There were nurses and technicians all over the place poking and prodding me and hooking me up to all kinds of machines.  They told me to be still and not move, but because I was still coughing stuff up, it was really hard.  I didn't want to be left by myself, so Shelly waited with me until Aaron was able to be with me.  They took at least 10 vials of blood and then had to have a specialist come and take blood from an artery to get a better read on my oxygen levels.  It was pretty painful.  I was still having fairly labored breathing.  They moved me to a trauma room, they said it was because of all of my visitors.  I knew it was because the doctors were the ones who needed more room to move around.  I know it was really because they were thinking they would need to put me on a ventilator.  I was just praying they didn't need to do that. I was so scared.   I kept asking if they were going to crack open my chest.  Dr. Castle, one of the trauma docs, jokingly said "No, that gets too messy."  He was very kind and kept reassuring me that everything was ok and they just needed to figure out what was going on with me.

     Let me take you back to a few days before.  Evan was a bit jaundiced when Clarice, one of our midwives visited us for Evan's 2 day check-up.  She suggested we put him in the sun as much as possible, but took his blood to be checked anyway.  Before we moved to the trauma room, Aaron got a phone call from Clarice.  Evan's Billy Reuben was 21, which was way too high.  He would need photo therapy and would have to be admitted to the hospital.  Aaron explained that we were already there for me.  She called and made all the arrangements.  My mom and dad stayed with me while Aaron and Andrea went upstairs to the Pediatric Unit to have Evan admitted.   

     They did an Echo cardiogram and an EKG.  They didn't like what they saw and immediately started me on medication and hooked me up to a different kind of oxygen mask.  Many people call it the Darth Vader mask, but in reality it is called a C-Pap.  It is basically pressurized oxygen that is FORCED into your body.  It helped bring my oxygen level up, but all it really did was make my mouth and throat dry.  I was so thirsty, but for some reason they wouldn't let me have anything to drink.  I didn't know why.     My dad is diabetic and hadn't had dinner yet.  My sister Angie was able to come and sit with me so my mom and dad could get something to eat.  I was hooked up to monitors and IVs and  then they put in a catheter.  I was scared.  I still didn't know what was going on.  I felt bad for Aaron.  He had to be with Evan and I wanted him to be with me.  He had to divide his time between us and we were on opposite ends of the hospital.  I wanted to go home.  I wanted to be with Evan.  I was leaking breast milk and needed to nurse or pump. There were so many different doctors coming in and out and talking to me and asking me questions but they weren't telling me anything. I still had no idea what was wrong with me...

Why can't I Breathe?

      Evan was born on a Saturday, and by Monday I was physically and emotionally exhausted.  I hadn't slept at all.  Evan wasn't fond of his bed and only slept when we held him. So it was extremely hard to sleep when we couldn't even lay him down. He was also having a hard time latching which made breastfeeding quite difficult.  He cried so hard when he was hungry but he just couldn't quite get the hang of eating.  We decided to use an eye dropper and milk that I had pumped so we could make sure he was eating something.  And that way my husband Aaron could help feed him too. We had lots of visitors when we came home.  They made sure we were fed and were resting.  I was so excited when my younger sister Andrea came back from Jamaica and was finally able to meet Evan.  It was nice to have people come visit and help keep us company.  I must admit I was a bit nervous about taking care of Evan.  I was unsure if I could actually take care of him right, even though I had spent the majority of my life taking care of other people's children.

     At about 11 o'clock Monday evening, I began having trouble breathing.  I thought I was having some sort of panic attack. I was sure it was some sort of postpartum mood disorder.  I was scared.  And the more scared I got, the worse my breathing was.  I couldn't catch my breath and every time I exhaled, I heard a wheeze.  It felt like someone was standing on my chest and I just couldn't breathe in deep enough.  I was starting to sweat and began panicking even more.  I was panting and really struggling to catch my breath.  I thought my airway was closing.  I was terrified that I would die and leave Aaron a single dad with a newborn.  I was praying that didn't happen.  I decided that it might be a good idea to call 911.  When the paramedics came Aaron was feeding Evan and trying not to freak out too much, even though I know he was just as scared as I was.  The paramedics checked my blood pressure and it was sky high.  They listened to my lungs and said they sounded fine, but I could still hear my wheeze and it made me nervous.  After they had been there for a few minutes, my breathing began to regulate and it became easier to breathe.  I decided not to go with them in the ambulance to the hospital so they left. 

     In the mean time Aaron had called my mom and dad to let them know what was going on. When they arrived I was still a bit scared and quite shook up from the whole ordeal.  My mom said that I should probably get checked out, so we got all packed up and headed to the Emergency Room.  We decided to go to the one that was closest instead of the one that would have be the best.  I nursed Evan for a little bit while we waited and he fell asleep.  They admitted me and hooked me up to an IV and took some blood.  The doctor was concerned that I may have developed a blood clot in my lungs since I had just had a baby.  They did an EKG and after a while they did a chest x-ray and a CT scan of my chest.  They gave me a breathing treatment that seemed to help but made me gag.  After a very long and sleepless night, the doctor told me that I had patchy spots in my lungs that may be pneumonia but that I needed to go see my regular doctor for a follow-up and to give me a prescription for an antibiotic.  I was discharged at 7 am  I found out later that when you are admitted to a hospital, you can't see your primary care physician the same day that you are discharged from the hospital...stupid insurance!  So I had to wait until the next day,Wednesday, to see my doctor.

     Tuesday, the day that I was discharged, I tried to sleep with absolutely no luck.  My mom stayed with us to help take care of Evan so that Aaron and I could sleep.  Every time I laid down or even tried to doze off, I felt like I was going to stop breathing.  When I closed my eyes and laid down, I would hear my wheeze and start to panic.  My mom and I had a long talk about how I was feeling.  We were both thinking that I was suffering from anxiety and panic attacks due to having a baby.  I was even more convinced of this when I would feed Evan.  It seemed that every time I picked him up and put him to my chest to nurse him, I would have trouble breathing.  It got so bad that I would pass him off to someone else to feed with the eyedropper.  I felt guilty, but I physically couldn't feed him.  I felt terrible and I cried a lot because I just couldn't breathe no matter what I did.

     After continuing to struggle with my breathing, I decided that I needed to do something to help.  So in the wee hours of the morning, Aaron and I made our way back to the emergency room to see if there was something they could do for me.  By the time I arrived, I was really having a hard time.  I explained to the receptionist what was going on.  She was extremely upset that the doctors hadn't prescribed me something to help.  A few minutes later an intern came out and explained that they couldn't do anything for me without admitting me.  I was in no mood to be re-admitted so I told him that I just needed a prescription or a breathing treatment and that it was ridiculous that they didn't give me anything when I was there before.  He came back a few minutes later with a prescription for an inhaler.  We had to drive to the other side of town to get it filled and by the time we got home the sun was coming up.  Thank God for my mom.  She is amazing and I am so glad that she was there to take care of Evan while we were going through our little ordeal.

     I went to my doctor on Wednesday and she did a few things to reassure me that I was going to be OK.  She told me to lay down and relax and try to rest while she monitored my breathing and my oxygen level.  She had me lay both on my back and my side, and everything seemed to be going well.  My oxygen was were it was supposed to be and my blood pressure was in my normal range.  She listened to my lungs and said that they did sound heavy (possibly due to pneumonia)  and wrote me a prescription for an antibiotic.  She said that she wanted to see me again on Friday.  I went home and ate a little bit and I think I maybe even took a nap.  Everyone thought that I would be alright. I had no idea there was something menacing going on inside my body...

Evan's Story

   

When Evan was born he was perfect in every way.  Our  pregnancy, labor and delivery were absolutely perfect.  I thought, “This can’t be any more perfect!”  After my “baby high” wore off at the birth center, I noticed there was something a bit different about Evan’s right hand.  I kept thinking that he had somehow got himself tangled in his umbilical cord because there were little "strings" hanging from his fingers.

     The midwives did a great job of hiding it during our initial snuggle time so I didn’t notice it and freak out.  He has what’s called Amniotic Band Syndrome. We also discovered that the ABS had caused Evan to have somewhat of a club foot/leg as well. 





      I was nervous at first because I had no idea what to expect when we took him home.  Would he have to have surgery?  Would they amputate his fingers?  Would they have to break his leg?  Would he be ok?  I went crazy doing all kinds of research to get as much information as I could.  Amniotic Band Syndrome is not very common, but not uncommon at the same time.  “It occurs in about 1 in 1,200 live births, but is also believed to be the cause of 178 in 10,000 miscarriages.  Up to 50% of cases have other congenital anomalies including cleft lip, cleft palate, and clubfoot deformity.”  The Amniotic Band Syndrome link has some good information that you should check out as well. :)

            We made an appointment with Evan’s pediatrician right away.  She referred us to an orthopedic doctor @ the Brighton Health Center (A branch of U of M Children’s Hospital).  We go see them May 3^rd for our first consultation.  Hopefully they will tell us that Evan will only need minimal surgery and possibly a brace to straighten out his leg.  I guess we will just have to wait and see. :)

          

5 days old