Wednesday, February 13, 2013


Lately, I have been hearing a song that takes me back to Maxson's diagnosis, surgery, recovery and fight with his CHD.  I think this song is fitting for those facing adversity, those struggling with a new diagnosis, those facing an upcoming surgery.  I just love this song.  It feels comforting in some sort of way.  It also reminds me that....what we face is not in our hands.  It makes me want to say:  God...please know that I love my child so very much.  Please watch over him, help me walk through this uncertainty and please keep him safe.  I hope you feel this song as much as I do.

Tuesday, February 12, 2013

Impact of CHD

This is a recycled post from last year.  To me, it interesting to see how the diagnosis of CHD in a sibling can impact family members, especially a teenager.  Alisyn wrote this for her English class and received an A+ on this paper.  She recently volunteered to be on the committee  at her high school to raise funds for Riley Hospital, which is where Maxson has had his heart surgeries and procedures. Even though Riley is 3 hours away from here, our community is a huge supporter of the hospital.   She asked me to speak about our experiences with Riley and bring Maxson to the fundraiser so everyone can see what a wonderful hero he is. 

So now, words from a teenage sibling affected by CHD

October 15, 2009, a day that will never be forgotten. Normally, it could be the day when a new baby would be born, and soon after, a day when that baby would be taken home from the hospital. A day that brings memorable moments and one that is filled with joy and happiness. Instead, it was a day filled with mixed feelings, tears and emotional pain. A day that had everyone on their toes, wondering and praying for a miracle.

On October 15, 2009, my little brother , Maxson, was brought into this world. I had thoughts racing through my mind that I couldn't fully understand...having a new baby brother, so little and fragile, so cute and innocent. How he had not asked for any of this, how he had done nothing wrong, why would God do this to him?

Almost four months prior to his birth, my mom had been told that her baby had a severe and complicated heart condition that would affect him his whole life. Maxson was born at Riley's Hospital for Children in Indianapolis. Five days before his birth, on October 10, my stepdad David, both my grandma and grandpa's, my sister and I all drove to Indianapolis to move into the termporary house that we would be living in for the period of time that my brother would be in the hospital. It was a pretty house, two stories, filled with vaulted ceilings, but yet, it wasn't home where we wanted to be.

The day Max was born was a very stressful and nerve racking day. The night before, my mom and David were running around the house with all their bags and hurrying to rush out the door to get to the hospital. My sister and I had to say at the house with Nanny because children were not allowed at the hospital because of the horrible flu season. The next morning, the doctors would start labor. David would call the house almost every half hour to keep us updated. Nearly twelve hours had past and we had almost given up on the thought that he would be born that day. Finally, the call that we were waiting for had arrived. He had been born! During that phone call with my mom, I began to feel sorry for her, she had told me that she only got a glance at Max and then the nurses quickly rushed him to a special room to hook him up to ventilators and machines so that he would not die from lack of oxygen.

November 23, 2009 was the day of Maxson's first, but certainly not his last, open heart surgery. He was only five weeks old. The procedure took about eight hours. It was long and enduring. I remember praying all day, and wondering how everything was going, or if the doctors were going to be able to make the surgery a success, or if he was going to make it out a survivor. At 8:30 that night was when we got the call from my mom saying that Max had made it through the surgery just fine and that the doctors said he did better than expected. I felt like a heavy weight had just been lifted off my body. I was so relieved that I could breathe again. I thanked God for watching over my brother and for keeping him safe.

My sister and I had to stay home with our grandparents, three hours away from where Max was. My mom and David would be staying in Indianapolis with my brother until he was ready to come home. Finally, the day arrived when my mom and David brought Max home. Seeing him brought tears to my eyes. It made me think how strong this little baby was for undergoing open heart surgery and making it out a survivor. It truly was a day that I will never forget.

Two years later, Max is doing better than my family and I could have ever imagined and hoped for. Along with being cute, walking around and having fun, Max still has that attitude that all two year olds have. I never really thought about the kids at Riley and the families who have kids with medical problems. After Max was born, it really made me think about it and how scary and overwhelming it is...not knowing if they are going to make it or not. Now, our friends and family raise and donate money to the Riley Hospital to help out other children in need. Overall, I learned that everything happens for a reason. You may not fully understand why, but if you have faith in God, he will give you the strength to get through it.

Friday, February 8, 2013

Heart Month is here! It is time to educate and spread the word about one of the deadliest forms of birth defects....Congential Heart Defects (CHD). Our special week, one very near and dear,
CHD Awareness Week
February 7th - February 14th

Here are a few facts about CHD....
.....Congentital Heart Defects are the number one birth defect.....

.....One out of every 100 babies (approx 40,000 each year) are born with some form of Congenital Heart Defect.....

.....Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer is five times higher than funding for CHD's.....

.....The American Heart Association directs $0.30 of every dollar towards research. The remaining goes towards administration, education and fundraising efforts. Of the $0.30 that goes towards research, only $0.01 goes towards pediatric cardiology for CHD.....

There are many things going on, both locally and in blogland, to celebrate and bring awareness to Congenital Heart Defects. Please take note and show your support by participating and spreading awareness.
Looking for a way to become involved? The BEST way to spread awareness is to get the word out. Realize that CHD affects many more families then you are aware off. Participate in the CHD Awareness Week events.  Any little bit you can do that spreads awareness helps so many babies and families on their journey with CHD!

Thursday, February 7, 2013

CHD Awareness Week - Day 1

I haven't quite decided what direction I want my posts to go this year, so there may be a jumble of what seems to be random posts.  The most important thing for this week, is to bring awareness to something we live with everyday.  There are several things going on in blog land this week, and I will be sharing links to other blogs that are highlighting and spreading awareness for CHD Week.

Tuesday, December 25, 2012

Merry Christmas!

Things have been hectic and I have not had a chance to send our Christmas cards this year.  We hope everyone has a Blessed and Merry Christmas season.

Monday, December 24, 2012

Love Hate Relationship

Here are Max's statistics when he was admitted to the hospital.  Key focus on the 93 sat rate and heart rate of 125.  He usually sats at 100 with a heart rate around 85-89.  Fever increases his heart rate, and since his lungs are filled with goop, his sats are down.

I have to say, I have a love - hate relationship with this little object pictured below.  Love it because it tracks Max's oxygen saturation levels.  As you can see, he is still sitting low at 95.  This was late Sunday night before his sats dipped close to 80.  Hate it because the alarm goes off and lights flash when his sats dip too low, then continue to go off every few seconds until his sats come back up.  This little machine can fill a person with lots of anxiety, not to mention, not being able to sleep with all that racket going on all the time. 

If I never had to deal with this sat monitor again, I would be delighted! 

Rainy Days and Christmas Eve

You have probably thought I've fallen off the blog land since I have not posted in forever.  I planned to do a end of year...all encompassing what we have been up to post, but instead I have a different sort of update.

We have had a rough couple of days around here.  Our house has been laden with sickness.  Unfortunately Max has come down with a respiratory ailment that started on Thursday.  He spiked a pretty good fever and an awful cough.  After a couple nights of no sleep and lots of coughing, I took him to the after hours pediatric clinic.  Thankfully they were cautious enough to order a flu swab, chest x-ray and bloodwork.  The flu swab was negative, but the chest x-ray showed the start of pneumonia.  So, off the the hospital we went. 

Max was admitted on Sunday afternoon to start antibiotics for pnuemonia.  Last night was a long night although he did rest better than he has the last two nights.  His oxygen sats dipped into the low 80's during the night, which prompted them to give him oxygen via nasal canula.  He did not like that at all and decided to pull it out about four different times.  Between his restlessness, the monitors and alarms beeping when his sats dipped too low, David and I did not get much sleep either.

The on call doc came to see him this morning and determined we would be staying the day and another night.  Merry Christmas to us!  Not what we asked for, but could be much worse.  And for that, we are thankful.