Micah got her wings on her 48th day

I can't believe I actually couldn't wait to make this post.  I feel like everyone should know more about our little girl and how she has changed everyone's life around her.  She has given us theeeee most amazing LOVE anyone could ever ask for.   

Last week was one of the toughest weeks of our lives.  Micah had survived her 5th "episode" (where she needed to be revived) and I'm sure you can imagine how much these episodes were taking a toll on her little (already) weak body.  Unfortunately, when it happened Bill was alone with her at her bedside and I was around the corner in the pump room pumping away.  When I came out, I saw a bunch of people at Micah's bedside and I was in complete SHOCK.  I think I was just so numb from it happening over and over again that I didn't even panic or cry.  As soon as I met eyes with some of the nurses and I saw the fear in their eyes, I knew they were terrified for ME and that's when it hit me.  Bill grabbed my hand and we went to a more private area to just cry with each other.  About an hour later we met with our neo team (neonatalogy) and they told us that Micah's episodes were solely caused by her inability to swallow her secretions.  Her diaphragm seemed to be getting weaker with each event. This was DEVASTATING to hear. The plan was to let her rest and then meet with neurology later in the week to discuss the results of the muscle biopsy. (we were praying so hard for a miracle) 

The following day Lauren (one of Micah's favorite nurses among many) dressed her in this adorable red "daddy and me" onesie with the bow to match.  She knew after what Bill had gone through the day before that he needed to see her in that outfit.   They are so considerate of our feelings all the time. I already miss our TEAM 4 nurses sooooooo much. 

Here she is.....

Friday came and we had to meet with our neo team and the neurologists. I will never forget this meeting for as long as I live. We were told that the muscle biopsy results came back and they were not specific. UGHHHH...no answers again! What the heck caused her to be like this? I am so sick of asking that question. WHY?????? Why Micah? She doesn't deserve this.  All they could tell us was that Micah's myopathy (muscle disorder) wasn't the type of myopathy to improve.  Therefore, she could always be like this or she could eventually get worse.  I again was so numb from everything that I didn't cry until we left that meeting.  Were they saying she was going to die if she had another episode? The UNKNOWN was absolutely horrible.  We then began to talk about the things we wanted to do in order to prepare Micah and ourselves for her passing, god forbid something happen.  

My sister, Holly, and my mom both had mentioned baptizing her so we decided we needed to do that ASAP.  The next day just happened to be Sunday so it worked out perfectly. The night before my mom went to search for the smallest most beautiful white dress she could find. Of course she bought a headband to match and a headband isn't complete without a bow <3  THANKS KAR!!!!

The baptism was so very special and she looked absolutely adorable in white.  We layed her on a prayer shawl that her Nana had made for her a couple weeks ago. It is the most beautiful shawl I've ever seen and I will forever wrap myself in it and think of Micah.  The nurses made our day so special...a BIG BIG thank you to ANNE for getting us candles and a cute seashell to pour the holy water out of.  We really appreciated it. 

Here are some pics of Micah's special day.....

 

After Micah's last episode she seemed to be getting weaker and weaker.  She was sleeping more than usual and still wasn't gaining any weight.  She had only gained a couple ounces since she was born.  She was our little skinny minny but was still putting up a fight....

Micah had another episode on Wednesday around 6pm.  She took her last breath at 6:16pm.  We held her so tight and let her know it was okay and that there are plenty of wonderful people up there waiting for her.  

On Micah's final day she was so blessed to have Bri taking care of her.  Bri had become very close to our whole family and we will continue to keep in touch with her. We CAN'T thank her enough for EVERYTHING and she knows exactly what we are talking about. 

Micah HEARTS Bri <3

  

Our little peanut was alive for 48 days and those were the best 48 days of our lives.  I still can't believe we won't be waking up tomorrow and driving to CHOP to see her beautiful face.  She is in a MUCH MUCH better place now and is probably running around barefoot in the grass.  At least that's how Bill and I like to imagine her =)  She has been called an angel so many times in her short lived life but it is so true.  We just didn't think she'd fly away so soon. We were so INCREDIBLY lucky to have been chosen to be her parents. I'm pretty sure you all remember that Micah's favorite number was 13 because of her birth numbers (7-13-12, 6 lbs 13 oz, 1300 military time). 

Well if you add up all of the numbers in her time of death(6:16pm), guess what they add up to?   

Coincidence? I think NOT!  There has never been a dull moment with this little momma. 

She kept us on our toes constantly and we LOVE her for that.

Here is a sweet pic of her peacefully sleeping in her daddy's hero's arms. She adored Bill in every way possible and I am so lucky I was able to witness that.  

  Micah has never spoken a word 

but speaks volumes with her eyes. We can't thank GOD enough for this. 

 Her eyes will forever be engraved in our hearts.  

Rest in Peace Sweetie!

   

We will NEVER stop HEARTING Micah!