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!

My 30th Birthday

The BEST birthday gift ever is this little peanut but an even better gift was being able to finally hold her and hear her cry after 2 days of not being able to do either.  This is me holding her on Saturday after she had just been extubated!  

You can just see the exhaustion in her eyes...

 After she had those two episodes on Monday she had another scary one on Thursday at 2am.  We got a call at 4am and you can imagine what that must have felt like to see that 215 number on your phone in the middle of the night. HORRIBLE!  I sat up and immediately said Bill's name to make sure he was up before I answered the call.  It was the nurse practitioner telling us that Micah had another BAD episode and this time they had to put her on a ventilator. GASP....GASP again!  The only good thing was that she was still doing most of her breathing on her own. She needed to be intubated to keep her airway safe. (intubation=a breathing tube put into the mouth and it goes all the way down to where the lungs branch out.  It will keep her airway open so no secretions or reflux can get into her lungs) After having those 3 life threatening episodes in 1 week we knew there was bound to be something wrong with her lungs.  Every time she would reflux she would aspirate and after that happening 3 times she ended up with a collapsed lung.  POOR THING is only 5 weeks old and she has already been through so much....what a fighter!!! But anyway while she was intubated you could not hear her, which was the hardest part. We would see her face crying hysterically but nothing was coming out.  ABSOLUTELY horrible! Another thing that was just horrendous to see was an IV in her scalp. Her veins are so hard to find that they had to resort to the scalp.  When we finally saw her Thursday morning I cried for about 2 hours just because of that damn IV.  

 This is her crying for the first time after being extubated (tube getting removed). She is very annoyed by me kissing her to death...

We also got to play dress up once she was able to be taken out of her crib. I HATED not being able to feel her warm skin against mine for two days. This onesie was made by my Aunt Cindy!  I am in LOVE with it. Thanks Aunt Cindy! Micah was in heaven when I put this on her.  

As of right now Micah is on CPAP,  that bigger tube underneath her nose, which is giving her a small dose of oxygen and she is awaiting another surgery to get a nissin. The nissin will stop her reflux completely, it is a small wrap on her flap that connects her stomach to her esophagus. This will prevent anything that could possibly come back up her throat.  She can't get surgery again until her gtube completely heals, so it could be another 2-3 weeks.  At least this will give her time to grow at CHOP considering she is NOT ready to come home and we are okay with that.  She got extubated on Saturday and the doctors looked at her lung one more time and it seemed to be getting better.  She sounds VERY congested but at least she is breathing on her own and does not have that horrible tube down her throat anymore.  

Here is our peanut all ready for a good night's sleep on Saturday night....   

Back to my birthday.....it was amazing!  I arrived at CHOP and saw this on Micah's crib.  Soooo stinking cute!  I was ECSTATIC to see Micah's foot prints.  Man, are they huge or what?!?!  

Annie, Micah's night nurse, dressed her in this adorable outfit for my birthday.  OMG.....I could of died when I saw her!  I love that the nurses love dressing her up as much as I do. They all say Micah is best dressed baby at CHOP! Props go to my friend Cheryl for making this adorable hat for her.  You are AMAZING Cheryl, THANK YOU!

After we left CHOP, Bill and I went out for a nice dinner and then stopped at my parent's house for cake and presents.  My whole family put together 30 gifts for me.  It was one of the coolest ideas I've seen in a while.  My nieces and nephew took turns bringing me my presents one by one.  Let's just say I have A LOT of candy now =)

I got lots of yummy pastry treats today!!! A big THANKS to Dave & Nancy, Bri & Steph, and Dana!  I will be stocked for the next couple of weeks, thanks guys!!! 

We Heart Micah!

OH HOW WE LOVE MICAH'S NURSES....

After the LONG week we had with Micah's multiple episodes, I felt like the only thing that we could do to make us feel better was to say THANK YOU to our fabulous team of nurses.  Micah is SO LUCKY to have such an amazing group of people taking care of her.  

Bill and I decided we had to do something special for them, so we stocked them up on CANDY because I wanted to nibble on some because we know as soon as they get 8 hours into their 12 hour shift they need a little pick me up. They loved it so much and they were so appreciative.  We put together a pretty good selection of candy, along with a card from Bill and I, and then Micah put this "little" something together for them too.....   

When we arrived the next day the night nurses had put this HILARIOUS scene together overnight.  Apparently, they were all cracked out on candy and were having a little too much fun with this CPR baby.  TOO FUNNY!!! We were hysterical when we saw this.  Even more of a reason why we LOVE our nurses. 

There are a bunch of nurses that I haven't taken pictures of yet but I will get on that soon. In the meantime here are two of the sweetest nurses that Micah gets to hangout with all day long.

Thanks for all you do ladies!!! Bill and I LOVE hanging out with you too. We feel like we've known you guys forever.  You will definitely be invited to Micah's 1st birthday party. 

Bri (left) and Steph (right)

This is Chris, she might be the shortest funniest nurse we have on our team. 

She makes us laugh every day.  Thanks Chris!!!

And here is Micah's life saver, Lauren! Micah would not be here if it wasn't for Lauren and her amazing nursing skills. We DEFINITELY heart Lauren!   

We Heart Micah's Nurses!

SAVING A LIFE.....

This post title says it all.  Micah's LIFE was SAVED twice yesterday. We owe it all to two of our TEAM 4 nurses, Lauren and Tara.  We REALLY don't know how to thank them, there is NOTHING we could gift them that could equate to what they have done for us.  

There is nothing worse than seeing someone fighting for their life let alone your own little helpless newborn.  We witnessed Lauren and Tara reviving our little girl, yes I said  "reviving."  I know, it's still not REAL to me either but what is real is our baby girl breathing again.  

I thought it would never happen.  

When we arrived yesterday around 9am she had already been revived once.  We were very upset that we were not there to be with Micah during that critical time. However, after witnessing the 2nd event we were glad we didn't have to watch her suffer twice.  It was absolutely horrible to see her struggle for just 1 simple breath that we all take for granted every second of every day.  Again Micah is teaching us another lesson: Hug the ones you love NOW because you have no idea when they will be taken from you.  This was such a close call for us and every day now is a HUGE success in my eyes.  We are so lucky to be able to have her "soulful" eyes staring right back at us. (one of my friends mentioned that Micah has such deep soulful eyes and it was such a great way to describe them- Thanks Voula) 

Momma's never letting go......

These two episodes were caused by excess fluid in the back of her throat that ended up blocking her airway.  We think she was pooling her saliva(because she can't swallow strong enough) and then she refluxed and the combination of both was deadly.  After Micah's two episodes the doctors and nurses decided to put her on SIPAP, which is basically a very strong dose of oxygen flowing through her nose in order to expand her lungs. This will keep her airway open and it will push any fluid back down her throat or out through her mouth. Keep in mind we suction her mouth every hour to help her handle her saliva.  She is already HIGH MAINTENANCE...LOL!

 This is what the SIPAP looks like.  Of course, Micah makes this ugly apparatus look so cute. I love her.  She looks like a little baby rhino or unicorn. ADORBS!

Happy 1 Month to Micah!!!  

We will make her pay when she gets older for giving us a 

heart attack and lots of gray hair on her 1 month birthday....lol 

We are waiting to hear what the next step is in order to prevent these episodes from happening again. For the time being the SIPAP will keep her safe but we REALLY REALLY need her to start swallowing stronger. So please say some prayers in hopes that this will happen sooner than later.  

 We REALL REALLY Heart Micah!

FEELIN THE LOVE....

There are NO WORDS to describe the love we feel from all of you!  We have received SOOOOO many cards and SOOOO many generous gifts/donations.  The CHOP life has really put a dent in our wallets and the help we have received from ALL of you is really overwhelming.  It is amazing to see people reaching out left and right to send their love to our family.  We will never forget this for as long as we live.  This is what LIFE is about, being there for people when they need it most and you ALL have done just that.  We can't thank you enough!   

Micah has taught Bill and I so many life lessons and she is only 1 month old.  She has taught us to be patient, to have faith, to believe in each other, to never give up, to allow family to help when we need it most and to appreciate the gift of LIFE. Watching her struggle to swallow her own saliva really makes me look at other newborns and see them just as they are: COMPLETE MIRACLES.  Micah is our beautiful miracle and we are SOOOOOO very thankful for her.  I can't believe I used to live a life WITHOUT her.  Only God knows the LOVE we have for her and only he knows the path in front of her. We are so excited for the journey ahead. Micah has amazing things coming her way, I just know it.

Here she is two days after surgery (Saturday 8-11-12).... 

Hi, all of you kind and generous people!

Thank you all again for your AMAZING love and support.  Whether it was just a text, a kind donation, a facebook comment, a private message, a blog comment, an email, a phone call, a card, or a visit,  IT MEANT THE WORLD to us =)  

We Heart ALL of YOU!!!!

Week 4 - Skull X-ray & Surgery

At the start of this week Micah had a couple out of town visitors, Bill's sister Sue and her husband John and my cousin Joey. They came all the way from NC to see her beautiful face. I don't have a picture of Uncle Joey but here are Aunt Sue and Uncle John....

 I also finally snapped a pic of my dad and Micah.  It was long overdue considering my dad had been there a couple times already. 

Here's PopPop and Micah.....

He loves telling Micah all the wonderful things she should know about her Mommy.  Like how much I love  to nap and that when she comes home she will have to sleep on "Mommy's schedule." My dad loves to make fun of me and how much I like to sleep.  It never gets old. 

Micah also recently met two of our friends from work:

Jen and Eva

 About midweek Micah's doctors told us that they wanted the plastic surgery team to take a look at her jaw. She was scheduled for a skull X-ray so that they could evaluate her bone structure.  They were looking to see if maybe the size of her chin was affecting her tongue falling back into her throat.  Normally they do X-rays right at Micah's bedside but this time we had to roll her to another floor.

Here is a pic of her getting all cozy in her little bed that she gets transported in. The whole walk down to the X-ray room Micah wouldn't take her eyes off of the lights in the ceiling. It was so funny, her eyes just kept searching for the next light as soon as we would pass the last one. 

So we get to the X-ray room and the technician asks for Micah's nurse, Kelly, and I to come in and help keep her COMPLETELY still so he can get a good shot.  I was so excited I got to go in with her.  Kelly and I got to wear those hot lead aprons too. SCORE!!!!  It was a total success, Micah didn't move at all and we had her little itty bitty head squeezed between two foam squares, that kind of reminded me of bookends.  It literally took 3 minutes total, which was great because it was FREEZING in there.  Poor Micah was sooooo cold but the tech was kind enough to send her back with some warm blankets. Before we headed out he told us he would pass on the X-ray to our Attending Physician and then she would get Plastics to look at it. As of right now, the Attending said she was still waiting to hear back from Plastics but she had reviewed the X-ray herself and she saw nothing remarkable, which means it looked normal. We are still a little nervous to hear what Plastics has to stay. 

Here we are on the X-ray table...

Our little girl was still cold after the X-ray so we decided to put her in her NEW penguin hat that I bought off of ETSY before she was born. 

 I LOVE penguins and I LOVE this little penguin the most.....

The next day we found out that Micah would be having surgery later in the week.  She would be getting a gtube and a muscle biopsy.  The gtube is a feeding tube directly inserted into her stomach from just above her belly button.  It is a more secure solution for her feeds, especially since she could be coming home by the end of the month and we don't want her pulling out the feeding tube every 5 seconds.  Momma DOES NOT want to be shoving a tube up her nose and down into her stomach every couple of weeks. NOT FUN!!!! The muscle biopsy is to try and rule out any other muscular disorders that could have caused her low tone. They are both routine surgeries but we are still SO FREAKING nervous.  

Thursday arrived and it was a process to get Micah ready for surgery.  They had to stop her feeds at 4 am, they had to insert an IV, which took a couple sticks AGAIN before they could find a good vein, and they had to give her a special bath to make sure she didn't have any bacteria near where her incisions would be.  We ended up getting the call to roll her down to the PACU(post-anesthesia care unit) around 10:45am and then she didn't go into the OR until 12:15pm.

Here we are in the PACU waiting to go into the OR. They use the PACU as a waiting area as well for patients awaiting surgery. They check all paperwork here and they make sure all consent forms have been filled out before they begin. 

Once she got rolled back to the OR we got escorted to the waiting room.  They have such a great system in the surgery waiting room at CHOP. They have a good sized room where a nurse will come in every half hour or so and give EVERY parent in the room an update on how their child's surgery is going.  We got an update on Micah around 1:20 and she told us that they had just finished up inserting the gtube and that they were going to start the muscle biopsy. How cool is that?  I love that they keep NERVOUS parents up to date.  We ended up going to get food at 12:15pm and then I pumped to kill some time so we had just made it there for the update at 1:20 pm.  After her surgery was over, around 2:30pm, her surgeon came out to the waiting room to tell us how everything went.  He said it went very smoothly and that we could head back to her room in the NICU to be with her while she recovered. What a relief?!?! 

Here is her first pic after surgery without her feeding tube in her nose....

  

Here are a couple pics of Micah from today, the day after her surgery. 

She is still recovering so she is awfully sleepy.   

(This is exactly how I slept the last 4 months of my pregnancy LOL....)

We are excited to see her off of her cannula (oxygen tube). She has NOTHING on her face now.  I think I kissed her cheeks a million times today.  It was so weird to see her for the first time in 4 weeks with a clear face. She looks like a totally different baby now. 

Look at this clean and clear face....

As Micah's 4th week at CHOP comes to a close, we are so very thankful that she is still getting stronger and able to handle minor surgeries.  We all feel like it's only a matter of time before she will be coming home.  OH what a HAPPY DAY that will be!  Keep the prayers and positive energy headed her way because it really seems to be working.  THANK YOU ALL SO MUCH for stopping by.  I'll be back to write more on her 1 month birthday.  I still can't believe she has been at CHOP for 4 weeks. 

I'll send you off with one of my favorite pics of the two of us.....

We Heart Micah!