Extra Doses of Prayers and Meds Needed

Over the course of the day, Kaitlyn's pain has intensified and gotten to a point where we are doing everything and anything we can to help make her feel better.

Late afternoon we noticed that her hands and feet were really cold and her body was really warm. A sign that her heart isn't circulating throughout the entire body like it should. Her heart rate has been on the rise and was over 150 a few times earlier this evening.



We checked her temperature and it was 104 degrees! A cool bath and more pain medicine and she is resting somewhat comfortably now. I say "somewhat" because she occasionally cries out in pain.



We are not asking for a miracle, we know that this disease will take her life, we just don't want her to be in any pain. Please keep her in your thoughts and prayers. She needs them!

Breathtaking

Kaitlyn is still having ups and downs with her breathing. When she is sleeping, she seems to breathe fairly easily. But when she is awake it is very labored breathing and sounds pretty bad.

This morning while she was napping, she stopped breathing twice. The alarm on her pulse/ox went off and she started breathing again within a few seconds.

It is scary to hear your child's labored breathing and then it just stop... silence. She didn't wake up from any of the episodes, which is good. I don't want her to be in any pain or awareness of the fact that she had stopped breathing.

Right now she is still napping and I'm by her side listening to her breathe.

On a lighter note, we had a wonderful photo session with Faith the other day. She volunteers with Now I Lay Me Down To Sleep, an organization that takes photos of stillborn babies or babies/children who aren't going to leave the hospital alive. They take beautiful photos for the parents to treasure. She is simply amazing and has donated her time and talents to take photos of Kaitlyn and our family throughout our journey. Click here for more information on Images By Faith.

Here are some of the photos:

Faith also entered Kaitlyn and Cole into the Now I Lay Me Down To Sleep Cutest Kid 2012 contest. It is their primary fundraising event for the organization. We aren't sure what the winner gets, we really aren't in it for money or anything, but the photographer ALSO gets a big winning package. Please consider voting for Kaitlyn and/or Cole so that if one of them wins, we can "pay" Faith back for all the good that she has done for us. The photos that she has taken have been breathtaking and we will treasure them forever.

The contest is open to any of the NILMDTS photographers but the kids don't have to be sick to participate. As far as I know, Kaitlyn is the only one that will pass away probably before the contest is over. I just feel it would be so fitting that she win, especially with what this organization does. She will be a NILMDTS child.

Each vote is $1 and you can vote as many times as you want and all at the same time too. So if you wanted to give $3, you could do it in one donation, just click on the + or - signs to increase or decrease the amount you want to donate/vote. Here is the link for the contest. Please consider voting (same as donating) to this organization. It is unbelievable what these photographers do. I couldn't imagine going to a hospital and taking photos for a family with their stillborn child. They must have so much courage, strength and love in their hearts to do this on a regular basis. Please help this organization AND help Kaitlyn and/or Cole win. ;-)

Click here to vote for Kaitlyn

Click here to vote for Cole

The Road to Now

Many people have commented on the blog, Facebook, emails or in letters on how strong we are and how amazed they are at our faith. It wasn't always like that. I want to share with you a little bit of how we have come to be who we are now and how all of you have helped us get here. Trust me when I say, from the day of diagnosis to now, it has been the most difficult time in our lives. 

About a week before being diagnosed

There are many things that happen in our lives and we ask ourselves why? why me? why us? I used to be that person.

When we first got Kaitlyn's diagnosis when she was about 9 months old, I was devastated (She's now 2 1/2). She was our miracle baby. We had three miscarriages between 2007 and 2008 and were one month away from doing IVF, when we got pregnant with Kaitlyn. She was an answer to our prayers; a true miracle and gift from God.

A week old

After everything that we went through with the miscarriages and then being elated to have a "healthy" child. When we got the diagnosis, I was crushed and baffled at the same time. How could this happen? 1 in a million chance?!

Friday we got her diagnosis and Saturday we didn't know what to do, so we went to the zoo

At the zoo- looks like the bird is on my head!

I often found myself wondering, what good could come from three miscarriages and now... our miracle child has an "average age of death between two and four years old". In my mind- NOTHING.

As many of you have read in the past, the day before we got Kaitlyn's diagnosis, we found out that we were pregnant with Cole. Another question was- does our unborn child also have NPA? Will he die "between the age of two and four years old"?  Will both of our children be gone and we will be left in despair? He was tested at birth and does not have NPA but IS a carrier like Chip and I.

October 2010- Kaitlyn sitting on Cole (baby bump)

We used to be very involved in our church in Texas. We were small group leaders for middle school kids and involved in our HomeTeam. With Kaitlyn's diagnosis, it was easy to "not be up for going to church".

Hanging out with our HomeTeam friends before we left Texas

They even had a surprise 1st birthday party for Kaitlyn before we moved!

I was so angry I couldn't even look at a cross or go to church. It just made me angrier. After we moved from Texas to North Carolina, to be closer to family, I wouldn't put up any of our christian home decor. I didn't want to look at the beautiful framed cross or see any positive verses or hear people saying "everything happens for a reason" or "trust in God" or "maybe there will be a cure". How could I? I was beyond furious at God.

I never stopped believing in God but I was beyond angry at Him.

Despite my anger, I treasured every day that I had with Kaitlyn and I still do. Every morning, I would think, "What would make Kaitlyn happy today?" When Cole was born, I saw their interaction and felt love.

Seeing Cole for the first time

Proud Big Sister!

Over time, a quote that I often thought of was... "You never know how strong you are until being strong is the only choice you have." I was strong because Kaitlyn needed me to be and Cole needed me to be.

My faith turned a corner when we started this blog and started sharing Kaitlyn's story on Facebook. I started receiving messages about how Kaitlyn changed their perspective on life or that they are more thankful for their children after reading about Kaitlyn.

I started to realize that God had planned ALL OF THIS. Little things like the fact that I was pre-med in college and took medical terminology, anatomy, physiology, and got my EMT certification hit me that there was a reason for it. I was and am better able to understand the doctors and all of their medical jargon. I can respond in emergency situations like an EMT would and stop being "mom" and think "assess the situation", ABCs (Airway, Breathing, Circulation, etc.). I used to be frustrated that all of my pre-med classes were now considered my "electives" because I decided not to go to medical school. Ugh- organic chemistry, physics! I stayed in the healthcare field because I loved it, but I wanted to have a family and I didn't want to be on call all the time. God was preparing me for Kaitlyn, even over 10 years before she was born.  

June 2011

I was depressed and had anxiety while we were going through our miscarriages and still deal with depression and anxiety every day. I do, however; feel that having gone through three miscarriages made me have the ability and strength to imagine a life different than what I always imagined. I went to a counselor in Texas who had lost one of her twins at birth and learned about "alternate realities". Being able to even fathom or accept that life might be different than what you had always planned or envisioned. Trying to imagine a life without our own biological children and adopting children that need loving parents instead. It really helped us. I feel that it has helped us with Kaitlyn's diagnosis and knowing that she will be gone one day but that it is okay.

August 2011- at the hospital

I kid you not when I say that there were a number of days in the past few months where I received over 200 emails a day from people who were praying for Kaitlyn and their children were praying for Kaitlyn. It opened my eyes to how our precious daughter was changing people's hearts and lives. I know you have probably heard me say this before but even if it's just for a moment while you are reading the blog that Kaitlyn's story is touching your heart or making you feel differently about your life and the way that you lead it or whether it's for a day or a week or forever. She is making and has made a difference. More than I could ever have imagined. This is why she is here... to touch your heart, to make a difference, to make you realize what is most important to you, to see the goodness in others and have faith that there IS a reason, even if we don't understand why or can't see it at the time. 

Christmas 2011- One of my favorite pictures ever!

Don't get me wrong. I am not happy that Kaitlyn has NPA nor do I wish this on anyone. I will be beyond devastated when Kaitlyn passes away. Kaitlyn IS however a blessing from God sent here to touch others' hearts. So many people read our blog and feel so sad and yes it is terrible that she has to go through this but look at ALL the good that she has done! And she is only 2 1/2 years old! Now I feel so thankful that God chose us to be Kaitlyn's parents. To allow us to give her a voice and make such an impact in this world. Kaitlyn is a miracle and was created perfectly in the image of God.

Yesterday with Daddy

Please do not feel sorry for us for we are the lucky ones.