Tuesday, November 27, 2012

Prayers are needed

A childhood friend of mine, is in labor at the moment....

They found out 2 weeks ago , at their last sonogram before delivery, that their baby boy has Hypoplastic Left Heart Syndrome .  They did not know up until then that he had this congenital heart defect.

Here is her blog post of the day they found out.  (reading this is like going back in time for me, to when we were fighting for Mason's life....and how scary it is to know their heart is not complete)

Hunter and I had been told we were having a healthy baby boy.  All of our test had come back negative and the body scan we had at 20 weeks came back normal.  We were so excited to go to our last ultrasound November 12, 2012, to see how much our little man was weighing and determine when he could potentially make his debut.  He was weighing in at a whooping 6 lbs. 15 oz., they were able to show us a 4D of our handsome little man.  The nurse explained to us that Christian was not cooperating and she was not able to see the parts of the heart she needed to and that she was going to get her colleague that was a genius in getting the difficult heart pictures.  Hunter and I became nervous when the other nurse came in and was very quiet during the whole time she was scanning Christian.  She said she would go get the doctor and left.  Our world came crashing down when the doctor came in with a genetics specialist.  They explained that Christian's heart was not normal, but they were unsure of what exactly what was wrong and could only guess by what they were seeing.  We were devastated.  Why was this happening to us? What did I do to cause this? How did they miss it in the other ultrasounds?  We just could not understand.  They set up an appointment the next morning with a Pediatrics Cardiologist to do a fetal echocardiogram up in Wilmington, DE at a children's hospital, A. I. Dupont.  Needless to say Hunter and I barely slept that night.  I prayed the doctor's were wrong and that they had just misread my ultrasound and my baby boy was healthy. 

The next morning our worst fears were confirmed.  Our son in fact did have a Congenital Heart Defect, Hypoplastic Left Heart Syndrome.  I was numb when the doctor was trying to explain to me what all this meant and what the next actions would be for Christian.  I was stuck in this awful nightmare and I could not wake up.  I had so much anger built up towards other women I felt did not deserve the healthy baby they had been given when I was left here with a baby with a broken heart and I had done everything right.  The cardiothoratic surgeon that would be performing Christian's surgery met with us to introduce himself and reassure us.  The rest of the day was kind of a blur of tears and emotions.  Hunter and I did research and contacted other families that had been through the same thing.  I was able to talk through email to a sweet Christian woman that has a daughter with Hypoplastic Right Heart Syndrome.  Her story and faith helped me wake up today with a more positive attitude about our situation. 

Hunter and I know that this is going to be a very long and hard road ahead for our family.  We know it is going to challenge us as individuals, parents, and even as spouses.  We know that through all this it will help us grow stronger in our marriage, as parents, and in our faith.  We may not understand God's plan when giving us this "hiccup" in our life, but we trust it is for a greater purpose because we know His plan is perfect.  We have a wonderful support system through our families, friends, and military family.  We ask for prayer and encouragement through this.  We know there are going to be rough days, but we also know that God is bigger than this problem and He will never leave us nor forsake us.  We know He will be guiding the surgeon's hands on our little Superman's heart because he is the ultimate physician.  Our son is going to be so special and be such a testimony to others.

Baby Christian will need open heart surgery very soon after birth, then 2 more before the age of 3.  They have a long road ahead, but they know that God has chose them to be his parents for a reason ( though sometimes it doesnt seem fair)  Ashly's and Hunter's faith will guide them, and they will see in the end , how truly blessed they are.

So we ask that you lift Ashly, Hunter, and Baby Christian up in your prayers as they proced on this journey.  We ask that you continue to wrap your arms around them as they prepare their son for open heart surgery.  Please guide and protect them during this time Lord.  

 For updates on baby Christian
Please follow Ashly's blog http://hunterandashlyssupermanchristian.blogspot.com/  

Monday, November 26, 2012

Photo Dump (aka an update ) and the BIG GOLD WALKER

Once again I have neglected the blog...

I will blame this on 1st trimester tiredness!  But now that we are smooth sailing in the 2nd tri with this baby.... I will try harder to update more than once a month!

Here is a recap of what we been up too.....

Well this little guy is getting bigger by the day!   He is eating a ton of table foods now ( dairy free due to his allergy).  And falling asleep at lunch is becoming a regular occurrence these days!

 Mason is set to have his eye ( rescheduled 3 times now due to no PICU bed available) But until then...I will continue to stare at those beautiful sparkly eyes!

 Colby has been such a great big brother!  This kid LOVES his brother.  His favorite thing right now is helping him walk.  He is also doing great at his "at home preschool".   We have workbooks, crafts, and activities that we have Colby do.  He really loves learning!
Mason is quite the helper around the house as well...

Now lets move on to Mason's big news....

We are WALKING!!!

He can now walk half way across the living room with no stumbles!  He walks more than he crawls now too!  He always has a big smile on when hes doing it too. 

 We were given a walker by Mason's physical therapist.  She wanted to see if it would help put him in a better position while walking. ( Mason loves to use a traditional "push toy walker" but his posture and positioning while using it isn't ideal, since he would lean too far forward.) So his PT suggested that we try a walker ( the big gold colored walker) to see if we could get him in the right position....and guess what... it did!

We will continue to work with Mason on getting him all the tools he needs to accomplish all his goals.... Im pretty sure we own every kind of " helpful equiptment" that he could use right now!  (Hip helpers, Spio suite, Spio pants,  inserts for his shoes, a "support chair" and a walker...just to name a few!)

So i will leave you with a pic...untill our next post!  Mason just being silly!

Tuesday, November 6, 2012

We been a bit busy!

So I have neglected the blog once again.... SORRY!!!

Let me fill you in on what has been happening in our lives!

We are so happy to announce that we are expecting baby # 3 in May 2013 !!  Baby is growing and has a strong heartbeat!  We feel so blessed to be adding to our family once again!

Then we went on vacation!
Florida Key for 10 days.... It was heaven

Then when we came home we got ready for Halloween!
Macy painted his pumpkin...and himself...

 Then it was time for costumes!

 Macy was a Chicken... and Colby was a farmer!
 Thats all I have for now....better update in a few days!!

Friday, September 21, 2012

Its been 1 year...

Tomorrow will be Mason's 1 year " New Hear" anniversary.
1 yr since we had to place our tiny baby into the arms of the Dr.s who were going to save his life.

1 yr since we clung to every update the nurse gave us ( praying that every update meant he was doing ok)

1 yr since we waited 8+ hours to see him after surgery.

1 yr since my sweet baby's heart was fixed.
Echo before surgery

 Pre - Battle Scar pics

To think back on that day ( or see the photos) is still very "raw".   Yes, we are a year post-opt.  Yes, he is doing well now...... but that day,  I handed over my baby, not knowing if he would come back to us.   To have to put all your trust into a Dr. who you have only met for 20 min,  its hard.   Everything was so un certain.  There were no guarantees that everything would be ok.  All we could do was hand him over, and pray. 

And boy did we pray! 

All prepped - waiting to hand him over

Our whole family and friends were there to help us through that day.  We very much needed them there.  Words can never express how important they were to us that day.   Always keeping our spirits up,  helping distract us when possible.   We all were praying for the same thing that day,  praying for our Mason. 

After we got the WONDERFUL news that Mason had made it through surgery, we finally got to go back and see him for the first time....

 I had this lump in my through before walking back to see him.....   I was so happy to see him, but I was trying to brace myself for what I was about to see......

(Warning!  Graphic pics below)

 First time we got to see him

 Med towers

 morning after

 opened his eyes for the first time( late 2nd day)

 All together we were in the hospital for 18 days.

Cory was able to stay with me the first 8 days, but the last 10 I had to do by myself.  It was the hardest thing I have done.   To be away from my husband, my son. while sitting beside Mason, fighting to recover. 

Finally getting to hold him!

We went into Mason's surgery thinking we would be heading home in 5 days... We were there 18.  Mason had just about every complication in the book......but you would never know it today.   

He is strong, and is such a fighter! 

So Mommy & Daddy say:

Happy New Heart Day 

Love you so much!

Sunday, September 16, 2012

Long day

This past Wednesday was a very busy and very LONG day for Cory, Mason , and I. The 3 of us spent almost ALL day at Childrens Mercy Hospital. Mason had a full day of specialist appointments.

We arrived promptly at 745 am to check in at the down syndrome clinic inside CMH. This is always an appointment I enjoy actually. I know that might sound odd to some....

First off :
The down syndrome clinic is staffed with an amazing bunch of specialist, nurses, and techs who all specialize in children with DS.

2nd :
All of the patients that are seen at DS clinic have that extra special chromosome. That means that we sit in a waiting room with children who are all just like Macy. No comparing mason to " typical" children while waiting to be seen.

There is something special about that waiting room , and the parents that are waiting .... There are knowing smiles and head nods ... Because we are all on a journey we never expected but the journey isn't as hard as we thought We are all there, being proactive for our children. I sit in a room with most children sporting their " battle wounds" ( open heart surgery scars), wear glasses, or wearing shoe inserts. Things that are normal now ..... Are things that get stares in " typical waiting rooms". And we don't get odd stares , because everyone in that room has something similar. It's a good feeling of being around " our own".

It's just a good overall feeling , one that very few will ever understand.... And I'm ok with that.

So , this is how our DS clinic appt goes :
Sit in a room while 7-9 specialist rotate through your room in a 5 hour span. .....
Add in a 16 mo old who wants to cruise around or crawl ( anything but sit on your lap) to the equation .. Makes for a long time trapped in a room! But keeping with his amazingness , Mason did great.

We saw a audiologist , speech therapist , occupational therapist , dietician, physiologist , pediatrician , and social worker. Mason got a great check up from everyone and was even a over achiever in almost all categories !

After his clean bill of health we rushed over to the endocrinology clinic to see the dr about Masons thyroid. Mason was being seen because his thyroid levels are higher than they should be :(. So after some talking and looking over his blood work results , we decided to do another round of labs then go from there before we start meds.

After we finished at the endocrin office , we high tailed it to children's mercy south for his ophthalmologist appt and lab work.

We saw his new ophthalmologist ( very very nice) we found out mason will need surgery for an eye correction on the 27th of sept. **mason tilts his head back to focus his eyes... To repair this he will have surgery to detach his eye from the muscles , then adjust, then re attach to the eye**. Surgery will last about 1-1.5 hours and mason will most likely stay overnight.

After setting up his surgery date we headed down to labs to get his blood draw .... Long story short... 1.5 hrs later and a momma **this** close to punching a nurse... We left with no labs done.

So after spending 8am-430pm ... We finally got to head home ... In rush hour traffic.

We were so tired from such a long day , that ALL of us slept in the next morning!

Tuesday, September 11, 2012

Tomorrow will be busy .... And not in a good way

Tomorrow we will head to Kansas City, for a full day of dr appointments.

We will be leaving at around 6 am to make our way toward children's mercy hospital. Our first stop ( besides breakfast ) will be the down syndrome clinic. The down syndrome clinic is a several hour appointment to say the least. We basically sit in one room for several hours while different specialist rotate through your room ..... I'm talking like 8-10 specialist!! It gets overwhelming at times. The last time we were there was in oct of last year. ( shortly after masons open heart surgery. It was easy then because mason pretty much just slept and ate at that age ..... Well now mason is a mover and shaker! He is into everything! He wants down to run around and walk.... So 4 hrs of trying to contain a toddler ..... Please pray for us ;)

After the down syndrome clinic we will go to the endocrinologist , to see what we can do for Masons thyroid issues. ( his thyroid is elevated :(

We drive 30 min south to another appointment. This one is the optamologist to see about mason having eye surgery to correct 3 different issues going on... More on that later ....

Then finally we will load up and head back home . Mommy is just hoping for good news all around ... But I have a feeling were looking at at least 3 surgeries ......
Any prayer would be greatly appreciated.

This child is doing great with self feeding ..... If you can't tell!!!