Monday, June 24, 2013

Peekaboo Magazine Article

I know everybody that reads this blog already knows Evan's story, but I still wanted to document this article out of the Peekaboo magazine for scrapbook purposes.
Here is a link to the magazine and below is the story. I realize it is hard to read, so just the text is all the way at the end.

Fear, Sadness, Worry, Panic and LOVE- Evan’s miraculous journey

I have been sitting here for a long time thinking about how to start telling our son Evan’s story. I have started over quite a few times.  It is still very emotional for me to relive everything, but I am also happy to share his miraculous story with you.  So, I decided to start with my first blog entry after Evan’s birth.
“This has been the most difficult time of my life.  No parent should ever have to go through this.  I still feel like I am in a really bad dream and I am going to wake up and everything is fine.  Sweet baby Evan is one week old today and I can't believe everything we have been through in this week.  I can't believe I am sitting here in Little Rock and my perfect little baby boy is in the Cardiovascular ICU.  I am completely exhausted and depleted.  I am trying to get as much rest as I can, but it is almost impossible to rest when you know that your newborn child is very sick.  Every day is a rollercoaster of emotions.  It feels like for every piece of good news we get at least one piece of bad news.  Evan is a fighter and we have to believe in him, modern medicine and answered prayers.  The support from everybody has been overwhelming and it has been encouraging to us.  We need the prayers and support from everybody.  Evan was moved up to the CVICU on Saturday night after his heart function worsened and they had to intubate him to take some stress of his heart.  It sickens me to see him with all of the tubes, medicines and monitors.  I break down every time I walk into the room.  It is the hardest thing to see your child like that and not being able to hold him or help him.  I just feel helpless and that hurts very bad.  I am his mother and I should be able to hold him, protect him and make him feel better. I feel like I am not doing my job as a mom.  I know he is in good hands here at ACH.  The Doctors and Nurses have been wonderful.  I just wish they could figure out what is wrong with his little heart.  They have been able to rule out infections and viruses, but just don't know what is causing his little heart not to pump strong enough.  His heart is formed correctly, but the function is poor.  He looks so perfect on the outside.  How can he be so sick on the inside?  I am trying to be so strong, positive and optimistic! I know we have to be for him and for us, but it is very hard when you don't know what the outcome is going to be.  I do believe in miracles and we need one right now.  I know there are a lot of people praying for Evan and I am so thankful for that.  If you are reading this, please stop right now and say a little prayer for Evan.  Pray that he is strong enough to fight whatever he has and that the heart can heal on its own.  Pray that his heart function will improve over the next few days.  Pray that we will see small steps forward and no steps backwards.  Thank you!
He is sedated now and looks peaceful.  It looks like he is resting comfortably.  I just want to hold him and kiss him.  I want to be able to take him home and show him his room.  His big sister is so excited to play with him.  She has been doing OK through all of this, but it is extremely hard for us to keep a normal life for her.  She does give us strength and a few smiles here and there.  I don't know what I would do without her right now.  We are also so thankful that my mom, Scott's parents and Scott's sister Allison are down here with us right now.  I don't know what we would do without their support.  We have been able to take shifts and somebody has been with Evan 24/7, which gives me a little peace of mind.  I know we will not be able to keep this up all the time, but for right now it is very important to me.  The thought of him being by himself while he is so sick is unbearable.  I know he needs a lot of rest and needs to sleep, but it feels good knowing that somebody that loves him is sitting by his bedside.  We love him SO much and he needs to stay strong and fight this.  The next 7 days are critical and we need his heart function to improve.  I don't even want to think about what happens if it doesn't.
We want to thank everybody that has said a prayer for Evan and to all of our friends that have checked in with us, come down to visit us and have taken care of Hannah during all of this.
A week ago we thought we would be in the hospital for a few days due to his meconium aspiration during birth.  I thought the night of his birth when we were not able to hold him for the first 9 hours of his life was the longest night of my life.  Little did I know what else the week was going to bring for us.  We thought twice that we were going home.  He was a little jaundiced and we had to stay another night.  This turned out to be a blessing in disguise, because we were still in the hospital when his condition worsened.  He was moved from the nursery to the NICU, then airlifted to Little Rock NICU and now moved to the CVICU.  I keep thinking that it can't get any worse and I really hope that the worst is behind us.  This has been a huge test for us.  Scott has been my rock and I am so proud of him.  I know he is feeling the same way I do, but he has been so strong for me and Hannah.  I love you!  Dear Evan, please know that we love you with all of our being.  You are the sweetest little boy.”
This was my first blog entry after the fourth member of our family was born on January 14th, 2013 here in NWA.  This is not how it’s supposed to be. We were supposed to be home by then enjoying our newest little love. Evan was transported from NWA to Arkansas Children’s Hospital by the Angel One helicopter after experiencing heart failure.   I will never forget watching the helicopter with the two most important men in my life in it take off.  I fell down to my knees in the parking lot of the hospital and just prayed.  After the fateful night when he was intubated and given a 50% chance of survival is when he began his miraculous recovery. That night we heard the doctor talk about putting him on ECMO (life support) and the potential of a heart transplant if his condition doesn’t improve within 7-10 days.  Those words simply took my breath away.  We were so proud of him when we heard that he handled the intubation just fine and that he even had enough strength to put up a little fight.  They did not have to put him on ECMO, which was a huge blessing, because the concern with putting an infant on ECMO is that they will never come off it, because the body doesn’t know how to function on its own. Our world will never look the same again after what we experienced that night.  Evan gave every doctor a run for their money.  On top of his weak heart he also experienced kidney failure, high blood pressure and developed a blood clot.  He threw a lot of curveballs at everybody and tested positive for the CMV virus and a rare metabolic disease, but his symptoms did not match either of these conditions. After testing him again both were thankfully ruled a false positive.  In the end he proved over and over that he was a fighter and that God answered a lot of prayers. Evan continued to make huge strides and his heart healed, his blood clot dissolved and his kidneys recovered.  We still to this day do not know what caused Evan’s heart failure.  We heard several times from doctors and nurses that they were baffled and that they have never seen a child so critically ill make such a quick recovery.  We went through a lot of ups and downs, but we are so thankful that we were able to take our little miracle baby home after 24 days in the hospital. He has been doing wonderful at home and all of his follow up appointments have been great.

Wednesday, June 19, 2013

Little Man Is 5 Months Old

Our little man is already 5 months old.  He is such a sweet little boy and he has brought a lot of joy (and sleepless nights) to our family.  All of his follow up appointments have gone really well and we are so proud of him.  His blood pressure has remained stable with one medication.  The goal is still to have him weaned off all medications by the time he is 6 months old (he is still on one blood pressure medication, baby aspirin, prevacid and an antihistamine).  His eczema has been flaring up a lot and they have performed some allergy testing, but everything has come back negative.  So, now he is supposed to go see an allergist and I am trying to figure out his trigger points by process of elimination.

He has turned from his tummy to his back a few times now.  Scott has never seen it and doesn't quite believe me that it has happened.  He is doing a lot better with tummy time now.  He likes to put his toes in his mouth now and Hannah thinks that is pretty funny.  It is so special to see how he reacts to Hannah.  She can make him laugh like nobody else can.  She tries to teach him a lot of things.  She shows him how to roll over, walk, jump, swim and play games.

His napping still has not improved and his night time sleeping has been very hit or miss.  I do believe that his eczema is bothering him, because he has been scratching up his face again at night. We are just blessed with two kids that don't like to sleep.  He is a big boy and weighs 17 lbs already.  He was in the 90th percentile for heights and 75th percentile for weight at his 4 months check up.
He really enjoys swimming in the pool, reading books, singing songs, jumping in the jumperoo and playing with some rattles and other things he can hold on to.  He also likes to be silly:)
It's only been 5 months, but we can't even remember life without this sweet little boy.

Hannah's Party

Here are a few more pictures of Hannah's fourth birthday party.  I know we had a lot of fun and hope that everybody else enjoyed it just as much.  We swam, bounced, jumped, had lots of snacks, a pinata, BBQ from Big Rub BBQ food truck and cake. 

The tacos from the food truck were a big hit
Cake time

The pinata was a lot of fun, but quite's not easy to tell a bunch of kids to stay out of reach of the bat when there is candy involved. Do you like how we just tied it to a broomstick?  
She was still not ready to go to bed at the end of the night

Hannah is already planning her next birthday and wants to have a Olivia theme.  She does not think its too early to start the planning process.

On a different note I wanted to document a few things Hannah has recently said.  I told her last week that we need to find a gift for daddy for Father's day.  She asked me what that is and I explained it to her and asked her if she remembered when they picked out a gift for me for Mother's day.  A few minutes later she came up to me and asked "Mama, is there a kids Mother's day?".  Dear Hannah I am pretty sure every day is kids Mother's day.
When Hannah says or does something I have never seen her say or do before I always ask her where she got that from and she always says "I learned it up".
Hannah has watched me do a lot of squats, planks, push ups and lunges lately.  Sometimes she works out with me and comes up with her own movements.  After doing a few squats she said "Oh man my legs are getting tired". She was doing some sort of jumping jack with Scott the other night and said "Whew, working out is hard"

Tuesday, June 11, 2013

Curious Hannah turned 4

We had a great time celebrating Hannah's fourth birthday last weekend.  We had great weather for her pool party.....not too hot yet, but warm enough to swim.  Hannah wanted a Curious George theme, so we went with that (Curious George are her favorite books right now).

We really enjoyed having family and friends come to celebrate Hannah's birthday and open up the pool for the season.  Hannah was so excited to have cousin Bennett, Smith and Blaine come to visit along with Megan, Barry, Brian and Kerri.

Here are all the details of the party.
Sugar Cookies made by Mara
Super cute cake pops made by my friend Mary

Paper Goods made by Pink Grapefruit Designs 

The rest of the decorations

Curious George book and cookie party favor
The birthday girl

Next up the actual party.