And I miss you

Maybe that should be the title to every blog?  I think of you everyday.  The kids reminisce about you everyday too.  No day goes by without them talking about you.  Their memories are so sweet.  But, tonight I miss you.   My mommy heart aches.  Santa came to the house to see the kids tonight in his firetruck.  You loved the firemen.  You always told me how you wanted to be a fireman.  I didn't have the heart to tell you that it was never going to happen because of your heart and lungs.  I am so thankful to our friends at so many fire departments but especially the Philly Fire Dept and the Bloomingdale FD that were kind enough to give you your dream.  I love you and miss you to the moon and back my little prince!

Happy Angel-versary donor family, and Happy Transplant-aversary sweet boy

The title really speaks for itself.  Adam and I have such mixed feelings on today;  We were so incredibly happy that Weston was finally going to get a new heart and lungs one year ago today, we knew that another family was without their baby at the same time.  How do you overcome that?  How do you thank such selfless people?  We chose to honor Weston's donor-last year, and this year by having people sign up to be organ donors.  Last year, thousands signed up in honor of Weston and his sweet donor.  To me, organ donation is the ultimate gift.  His transplant meant our family was brought together and for a brief time, we planned on going home.  Thinking back now, God had other plans.  A year ago, just a couple of hours ago, Adam and I went to dinner with friends.  They were getting Weston settled and we had a moment to grab a bite to eat.  Upon arriving back, the prince was doing great.  As soon as he heard our voices back in his room, he tried to sit up.  He arrested.  The next minutes are a blur.  Adam and I were in a corner of his room begging God to not take him.  Meg came over to talk us through things while fav nurses did CPR on him.  Dr. K ordered in VA ECMO-Adam and I will NEVER forget that.  Dr. M, a new surgeon whom I had heard rave reviews about and had met earlier that morning came in, prepared to do ECMO.  At this same moment, doctors were being paged from their Christmas party across town.  So, as news spread, doctors started running.  Now, in retrospect, it was Weston's way.  He loved to be the life of the party.  At the time, it was horrifying.  I am so thankful for Jeff Chase.  Jeff was a total boss taking care of the entire code.  Lori, Erin, and Keith all did a fabulous job.  You can't just thank people who saved your child's life.  There just aren't enough thanks in the world.  Finally, once everyone thought he was settled, Adam and I went to the sleep room and cried.  We cried for the donor family that we had prayed for, for so long.  We were happy that it was finally Weston's turn at transplant, But, the future was so unknown after the arrest.

I haven't forgotten you

Dear Weston, I know it may feel like I have forgotten you because I haven't been keeping up with my blogs.  It has been 8 months today.  My heart hurts everyday for you.  While I am so happy that the kids talk about you so much, it is heartbreaking to hear them ask about you dying.  Halloween came and went.  It was one of your favorites.  I know you would have dressed up as a ninja or something.  Sutton put your Indiana Jones costume on and for a moment, he took my breath because he looked so much like you.  Kinley wore the same costume that you wore your first Halloween.  Soon, it will be Thanksgiving and then Christmas.  We went to storage to start getting out Christmas decorations.  You had so many beautiful ornaments last year.  My heart hurt a little more with each box that we opened so we took a few boxes and left, planning to go back this week.  I have been thinking so much about the last months with you.  I wonder if somehow you knew that you were having your last holidays with us because you put on such a brave, strong face for such a sick little boy.  I appreciate you giving us that.  I am glad the kids and us can look back with such fantastic memories.  I hope that your dad and I did everything to make all of your wishes come true.  I think about you so much when I am carrying the other kids.  You loved for me to carry you, our little prince.  Everyone would tell me to make you walk but I could have just carried you forever.

I don't think we will find our normal.  Time Hop is such a mixed blessing.  I love looking back at all of the pictures and things that we did in years past but to remember how sick you were is something that I will never forget.

This month is Pulmonary Hypertension Month.  While we never fully told people how terrifying your disease was, I know that you knew.  Every time you would go into a crisis and stare at your dad and me with that "help me" look, each time you would tell us that you couldn't "breave" even with 15 liters and 80 of nitric plus blow by, and each time you told us that your heart hurt-I cannot imagine how much pain you were truly in.  I hope that when God took you off to Heaven. all of the memories of all of the pain and suffering you went through vanished and you are only filled with joyful memories of how much we love you and how special you are.

So my sweet boy, don't ever think that because I haven't blogged that I have forgotten you or all of the people praying for us.  If it wasn't for their prayers, we wouldn't have made it this far.

I love you always and forever!

PS-The kids asked if they can decorate your clock for Christmas and I told them that it was OK.  I know you loved some Christmas decorations.

6 months and a surprise!

I will start with the fabulous surprise!  Adam Keeton and I completed our family on September 15, 2014.  I gave birth to Kinley Elizabeth Keeton.  When we found out we were going to have another baby, we were so worried about her health and my health that we decided to not do a formal announcement.  Our good friend, Woody, wrote Adam a special song for me to announce the pregnancy with. And, so many folks at CHOP helped me be able to care for Weston yet be as safe, prenatally, as possible around such toxic, post transplant meds and procedures.  We were able to tell Weston that he was going to be a big brother before he passed away and he was SO excited.  All of the kids had asked Santa for a baby for Christmas. When he passed away, we were still very early in pregnancy and we needed to focus on the kids and our family so we didn't feel comfortable sharing the news. We couldn't handle two public losses.  That's when we decided to make her birth a surprise. Everyone needed to be uplifted like we were throughout my pregnancy with her but we didn't want to stress people with worrying about Kinley or me. In so many ways, I know Weston was watching over us.  I had an appointment every week so we would take the kids and we would get to see her on the ultrasound and get to listen to heart heartbeat.  We had a 4D ultrasound and she looked just like Weston did when he would sleep.   Even our nurse practitioner at the perinatologist had met Weston because she used to work at the kids pediatrician.   Obviously, if you saw us, you saw me pregnant but everyone was so respectful and realized that we would share at just the right time. The doctors decided to take her early because of my complicated c-section with Ellie. I took steroid shots a week ago and had an amniocentesis on Thursday that showed that Kinley's lungs were mature. She had to go to the NICU because her blood sugar was very low (probably from the cord being wrapped around her body) and she was breathing very fast as a result of the low blood sugar. She has nothing like the issues that Weston had. We are hopeful that she will get to come back upstairs to the regular nursery either today or tomorrow. Thank you all so much for being part of our SURPRISE! We chose the name Kinley after Weston. His middle name was McKinley and he was named after his papaw who passed away in November. We chose Elizabeth as the middle name after Weston's best friend, Megan, who passed away from PH. She was Weston's angel and I have no doubt that the two of them are playing together everyday in Heaven.

Recovery has been so hard.  Post-partum emotions paired with grief makes me feel so lost sometimes.  It is like a seesaw of happiness and heartache.  Adam and I are so fortunate that God gave us sweet Kinley but everyday, I cry because I feel like Weston would have just loved her to pieces.    He treasured being a big brother and loved babies.  He named all of the pregnant nurses and doctors babies-Weston-whether they were a boy or a girl.  Weston has been gone 6 months today.  Sometimes, the time feels so short-like it all happened just yesterday and then some days, well, they just seem to last forever.  It is the deepest pain I have ever struggled with.  I am so thankful that we have such wonderful family and friends that have been supporting us and praying for us.  Almost everyday, someone tells me how they (or their church) have been praying for our family.  At Holston Valley, the hospital we delivered Kinley at, just about every doctor or nurse told us how much they had been praying for us.  It was so apparent when Kinley was in the NICU that Weston was right there with her.  I walked in to nurse her and saw one of Weston's first Sunday School teachers that was working as a nurse in the NICU.  It took me by surprise but she came up and told me how she had been praying for us, it was so genuine and really was such a highlight for me.  God sends you uplifting people when you need them the most.  It was so special that she got to be the nurse to graduate Kinley from the NICU to the regular floor and bring her in for her great-grandma Mitchell to see her for the first time.  I just felt like Weston was there with us and had been looking over Kinley the entire time.  Not to mention, while in the NICU for just 56 hours, Kinley managed to be channel Weston's strong will and pull out 2 IV's.   Every time I cry, I think about once, when I was rocking Weston after they thought he was going to pass away, I was crying and crying and crying.  He asked me sweetly if I would please stop making his head wet.  It made me laugh so much.

On November 1, our friends at SMILE for JC will be having a Frozen party.  All proceeds from photographs taken will be donated to Kari's Heart Foundation in honor of Weston.  We hope to see everyone all decked out in their most fabulous Frozen attire.    https://www.facebook.com/events/290667604469866/?fref=ts 

We have appreciated all of the baby gifts and the meals from everyone.  Our friend made a meal sign up if you are interested in bringing us food http://www.takethemameal.com/meals.php?t=TVFI9335&v=3a59f0408a 

I am attaching the song that Woody Wolfe put together for Adam to surprise him with the news of my pregnancy https://docs.google.com/file/d/0B_h63Z-R1xnqaTNyQ0hPaHR2TEE/edit   Thank you all for praying for us and loving our family!   Welcome to the family baby Kinley Elizabeth Keeton.  You are SO loved!

Our Little Hero turns 8

For a child who wasn't supposed to live past a few days old (even shorter since we had no idea he had a heart defect), 7 and a half years is an amazing feat. Today, well, this morning at 1:24am, Weston celebrated his 1st birthday in Heaven. In my mind, I know it he is having a ball with his best friend, Megan. He is getting the yummiest goodies and having the best time. Here on earth is a little different. My heart hurts. I can only liken it to that feeling when you get the breath knocked out of you-except it happens at just the thought of him. We asked people to wear RED in honor of Weston's bday and we have been overwhelmed with the response. You all make life easier for us just by showing us how much he was loved. We raised 901 dollars in honor of him and donated it to the rediothon. Check out the vignette that WOGL put together here (you need some tissues)https://drive.google.com/file/d/0B_h63Z-R1xnqbnRyUkZTeDVCQ2M/edit?usp=sharing People keep asking how we are doing. I am still not sure how to respond. We get through the days. We seem happy. We are doing "normal" family things. It is the blending in that I struggle with. How do you try to be normal after such an abnormal few years? I think God an I have an understanding. It is just going to take me awhile to get through this heartache and find my way again. My belief in God is still strong but I always felt like I could get through anything with God-like he carried us for the last few years. And now, I kind of feel dropped, disheveled, abandoned, and unsure of what to do next. Why am I in so much pain if God loves me so much? Then, there is that now so normal feeling of having the breath knocked out of me because the pain is so intense. And then, I see reminders that Weston is with me everywhere I go now and his life in Heaven is much greater and richer than anything we could have given him here. We asked folks to wear red today in honor of Weston and to spread awareness for Congenital Heart Defects and Pulmonary Hypertension. Both are so important to us. Please continue to keep our family in your thoughts and prayers. The kids are so excited to have a party for Weston in Heaven today.

Welcome

Welcome over to the Weston's Warriors Blog. Starting August 1, I will begin blogging and posting on this website instead of Weston's COTA page. The COTA page will be shut down and this will be our new page. There are lots of exciting things coming up-ways to honor Weston's legacy and events you will want to be part of. I look forward to our new journey together!