Thursday, September 6, 2012


Fall is the season in our house that holds deep significance.  Each leaf that falls from the tree is a meaning of life evolving, and how time passes.  With each Season comes brilliance, energy and hope for what it holds.  For me, September is a heartfelt time.  Interestingly enough, it resonates with other friends whom are close to us, and many school friends.  This past week on the playground, 12 different friends have asked how Makenzie's health is doing.  Trying to sound strong while being real, I share, "She is doing great and shows no symptoms of even having Type 1 Diabetes yet.  We take it as it comes and for now, she is a walking miracle. She rocks her 1/3 pancreas like it's nobody's business".

But honestly, I look at the Fall date of September 23rd as a marker. September 23rd, 2010, is when I rushed Makenzie to the hospital. It is a date that forever changed my entire families life. It's a date when my oldest daughter didn't recognize me at all.  It is when I looked at her big eyes, trying to stare into her soul, and thought her soul was being lifted away from me.

Flag catching, 9.20.2010
I had been in Portland for the Power MOB business conference from September 21-23rd. Honestly, it was an excuse to visit my heart city and be with some of my best girlfriends.  Rarely do I get away without the kids. While in Portland, Makenzie had fallen ill with stomach flu on September 22nd.  Keeping in constant touch with Jack and my Mom, they said to stay in Portland and enjoy myself.  As the day progressed, Jack shared she wasn't feeling better and after going to the pediatrician, they agreed she'd stay home the next day.  I asked my Mom if I should take an earlier flight. She said enjoy my morning and she'd be with Makenzie. The next morning, I attempted to "enjoy the time" while running the Leif Erickson trails with my dear friend, Sheri.  However, my gut wasn't feeling right.  It was heavy and I had an inkling something was off.  Upon calling Mom at the airport, she said Makenzie seemed dehydrated and that when I got home we should have her checked up again.  The less than two hour flight felt like ten hours.  Even with my Mom saying Makenzie just seemed dehydrated, my Mother instinct was on overload.  It was like I was being guided by airplane controllers waving their lights signaling, "All factors point towards your daughter being really sick. Be ready to run off the plane to take care of her".

My Dad picked me up from the airport, and as he pulled in front of my house I booked it inside to see Makenzie. My Mom looked at me and said, "Erin she isn't doing well and still can't keep things down. She just started the mouth bubbles after the last time we talked. I think she is sicker than stomach flu." Her eyes were as big as saucers, little face was foaming at the mouth, skin pale, body warm but extremities cold and she had no recognition of me.  Her mother. The woman who carried her for 9 months and nurtured her every day since birth. I held her and said nervously to my own Mom, "She isn't good Mom. She seems like it could be more than dehydration. I think we should go to Children's Hospital to give her fluids".  As my Dad drove the car, I said out loud with a focused tone I didn't know I possessed, "It has to be dehydration. I left 2 days ago with a dynamic 6 year old who was swimming alongside me, and now she seems so weak.  She must need to just keep her fluids down."  I had no idea how hard her strong little body had been working to fight off all the demons of broken down organs. Calling the pediatrician en route, I was rubbing Makenzie's hand hoping she'd recognize me. She didn't.

Hospital Life - 9.23.2010-12.16.2010
When we arrived at Children's Hospital Oakland, the nurses took Makenzie's vitals. While doing so, she shook like mad and had a seizure.  That seizure rushed us to the ER into a myriad of medical mayhem.  Makenzie was taken from my arms, laid on the table, and tubes started going in and out of her.  I maintained my calm, praying in my heart and mind to my God...Please let her be strong.  What is going on God, please let my Miracle be strong. Let her know we love her and let her please hear our voices.  I continued to talk to Makenzie as her eyes wandered through the faces above her, not knowing what was going on, but so out of her own body that she couldn't wince in pain.  My Dad had joined in the room than and stood behind me.  He rubbed my back with his big hands attempting to provide comfort, doing this while I rubbed Bug's legs simultaneously, hoping my touch could heal her body too.

Medical terms, questions, big words, talking above Makenzie's head, whispered conversations amongst the doctors, and a feeling of the unknown.  You could feel the room's nerves, since the medical team had no idea what was going on with Makenzie.  Every few minutes another pediatric specialist came in to do a test they could use to rule out the unknown.  When Jack arrived rushing in from work 30 minutes later, there was still no idea. The next hours felt like years.  Makenzie's body couldn't hold anything in.  It was breaking down. Each organ had decided to fail and not work together.  We are a TEAM, our little family unit, and her little team of a body decided to disagree with....each...organ.

Courage = Embracing Life's Challenges
Guilt began to rise within me.  What if she didn't recognize me again? What if she had gotten an infection to  her brain? What if I hadn't gone away and stayed home with the girls?  What if her body was breaking down and wouldn't come back? What if many what ifs rose up and enveloped my mind. While doing so, my inner voice screamed, "Don't go there Erin. DO NOT allow those thoughts to enter your body".

Beautiful Miracle- 8.16.2012
The pain of watching your helpless child, and not being able to connect with them, is an experience I don't wish upon anyone.  To stand there, praying they can hear your voice to calm them, praying that if it is their last moments in the world they could feel your love cradling their body is a living nightmare.  It is a feeling that now, almost 2 years after it happened, I sometimes still experience.  It is a feeling that doesn't wash away with countless showers, or with therapy sessions. Only with time.  It is one that likes to present itself when you think of the date that forever changed your life.

But it is also a time when you learn miracles do exist! It is a date that I associate with strength and courage, because on that date, we found out on a deeper level what our daughter was made of. It is a date that allowed me to trust my inner Mom voice.  It is a date that cemented Jack's and my partnership as parents, knowing we would not let our daughters down when they needed us most.  It is a date that even with haunting me, reminds me how far Makenzie has come.  

While watching her playing tag on the playground yesterday, pink leggings tight on her round buns, I felt grateful.  Another Mom asked me how she was doing, I said with a smile, "Look at her. She is doing incredible and taking it each day as it comes.  She knows what happened in a more mature level now, but she also is aware of how strong she is and what she is capable of overcoming."   I believe, September 23rd reminds us all of that.

Visit the Believe in ME Foundation to help provide quality childcare for siblings of hospitalized kids.

Almost 2 years ago...

Reading on Caring Bridge brings me back, and allows me to progress forward too.  Interesting how when in ICU there was still so much unknown with Makenzie...and now her future has unknowns too. But she is strong and doing great today! She rocks her 1/3 of a pancreas like nobody's business! 

Written Sep 28, 2010 11:14pm
Green Irish GirlMakenzie Christina Shirey Update- 9/28/10 by Erin Kreitz Shirey on Tuesday, September 28, 2010 at 3:33pm
Wow, who knew that life could change so fast. Makenzie is my hero, she is fighting so hard. She was swimming catching flags at the pool last Monday night and today, Tuesday afternoon, she is full of tubes and had a blood transfusion. Seriously, she kicks ass like no other. I am beyond grateful to be her Mom and have her call me "Mommy" as loud as she can.

Yesterday was a rough day. Makenzie needs oxygen now because her breathing is compromised and her left lung is now full of fluid. She did not like the various options for face masks for breathing and it was a battle. But we figured out how to make it work. In the midst of this, Makenzie had a CT scan to see what is going on in a greater level. Her poor little body is broken inside. Good news is her kidneys, bladder and stomach are looking ok. Bad news is her Pancreatitus is worse than first thought and she has colonitis. She has a case that is severe and the doctor's hadn't seen that bad before...not the news a parent wants to hear. Her blood cell count was low and her body needs to keep the good blood and get rid of the bad. In addition the rest is from the last few hours:
I talked with the specialists today, went over the CT scan and here is the breakdown.
  • Makenzie's pancreas has so much damage that part of the pancreas is almost missing. She needs a lot of time for it to heal.
  • more than 50% chance she will get the fluid filled sack- sore- on the pancreas as it heals and will need surgery to remove it.
  • She has Colonitis too, and it is damaged.
  • The concern is that there could be bacteria floating around in her body that can cause another infection. They are monitoring it closely because of her jeopardized system.
  • She is one tough kid- if we were to be in her shoes we would be so angry and in mush worse shape.
  • She got her catheter taken out because she was peeing so much - YEAH!- and will have to start peeing on her own or in a bed pan "Princess potty"
  • She is doing the breathing "vest" treatments again and did not like it. We decided every time she does treatments she has to have medicine before to calm her nerves.
  • Her left lung and side is full of a lot of fluid. The fluid is getting a little broken up, but she has a long way to go.
  • The influenza strain she was tested for is the concern because of it comprising her healing.
  • WE NEED TO KEEP HER SPIRIT AND DETERMINATION UP! She needs to keep getting frustrated, pissed off, happy, cuddly, sad and ready to make the next step.
  • She is really connecting with the Pulmenoary Specialist, Perry, and nurse Molly. That is key!
I just want to hear her laugh again. I want to take away all of this pain and make her feel good. The doctors said it is not a sprint but a marathon. And I said this will be her PR. They said that it will most likely be 7-14 more days in ER, another blood transfusion in the next while, and our goal is to have her home by Thanksgiving. After the CT scan and everything else, the dates have shifted. I am at a loss, but want to care of Jack and Emerson so much too. It is beyond challenging to be there and know that I have seen E for all of an hour daily the past few days. But I wouldn't be anywhere else and need my baby to get better. She is INCREDIBLE! Bo(college bestie) came by yesterday for a few hours and brought an iPhone full of games, movies, music which was perfect. She asked me to read in bed with her today which was nice.She is getting a strong voice in what she doesn't like, which is my normal Makenzie.
I feel grateful for all she is going through and for being the kid of Type A parents. She has a sense that she will win and get better. She doesn't have an option, and it is her only way to take the time to heal.
On a different note update- thanks SO MUCH for all of the emails and cards. I bring the cards to M an put them on her bulletin board of the ICU. It means the world to us that you are praying and sharing your kind words with us.I just got my computer approved by the medical team and can now write from her room when she is sleeping.It is key because Emerson can't see her until she is out of ICU and we will hopefully be able to Skype. They are sisters who are always together, so this is a a new challenge to have them apart. Emerson is doing incredible though! She is my little monkey!!
If you wanted to connect with anyone, my Mom and Sister, Tina and Robbie, MIL and SIL- Denise and Jen, and friends, Danielle, Colleen, Bo, Sandi and Sheri are the liasons. Emails are Mom-, robbie-, Danielle-, Colleen-, Sandi-, Sheri-, Denise-, Jen- We are not really at our house right now, so if you have a card for Makenzie please send it to my parents.
Thanks so much for your thoughts, kindness and concern for our baby girl. Jack and I appreciate it more than you know.We truly do, we truly do.
Erin, Jack, Makenzie and Emerson