Magic in Every Breath

Often, we fail to appreciate the things we've never had to do without. 

Until Ramsey, I don't think I stopped to consider the significance of every breath we take. When I was 5 months pregnant with him, we vacationed in Disney. Though I was fearful he'd never take a single breath on his own, I made a promise to return with him in 3 years.  In September, we fulfilled that promise with a celebration of his life at Disney World. 

Even though I never wanted to be that family wearing matching shirts, I couldn't think of a better reason to do so.  So, I designed T's for all the guys and girls.  The ladies and kids shirts had a silhouette of Ramsey holding a Mickey balloon and said "Magic in Every Breath". The men's shirts were simple stated, "Life is a Gift".  

It was a celebration worth repeating!!

Our group in front of Animal kingdom's "Tree of Life"

Our TinySuperhero

There's an awesome woman named Robyn who, with the help of her family, started TinySuperheroes. On her website Robyn states, "TinySuperheroes seeks to empower our little ones — one cape at a time. We donate capes to Extraordinary TinySuperheroes who exemplify strength and determination as they overcome great adversity. Once these Extraordinary TinySuperheroes are comfortable in their new capes, we feature them on our blog, in hopes of giving them a voice, their illness or disability a face, and the world the opportunity to stretch."

Visit the TinySuperheroes blog to read Robyn's take on our little hero. It's great to read his story from another's perspective and even better to raise awareness of CDH.

Covered with Love

For Kate on her birthday...

Shortly after Ramsey's diagnosis, I viewed a story on the local news about an amazing woman named Kate Crawford. After the loss of her daughter Shannon, and the subsequent NICU stay of her three other children, Kate and some friends started Project Sweet Peas. Project Sweet Peas is a non-profit organization run by volunteers across the country, who through personal experience have become passionate about providing comfort to families with children in the intensive care units and to those who have experienced pregnancy and infant loss. Kate named her division after her daughter...Project Sweet Peas Shannon's Star. Shannon's Star works with Children's Hospital of Pittsburgh and Magee-Womens NICUs to provide their patients, and families with items to aid them throughout their stay.

Kate's project was especially touching to me since I knew we would be one of the families served by her project. What the news didn't mention, but I soon discovered, was that Kate's daughter Shannon died from CDH. A few days later, Kate and I spoke for the first time. I had so many questions for Kate, and she was eager to help in any way she could. It was comforting to have gained a local friend who understood the fear of what we faced.

After Ramsey's birth, and before I was even discharged from West Penn, Kate delivered one of Project Sweat Peas signature tote bags. The bag had hospital necessities like paper, pens, chapstick and lotion...but it was filled with more than just that. It was filled with love.  There was a frame painted by Kate that said "Sweet Pea" and had Ramsey's name painted on it. A wooden turquoise star, also handpainted, read "Ramsey, Strong Soldier" (the meaning of his middle name). Kate selected a beautiful handmade quilt just for Ramsey. The fabric was covered in ladybugs, which she shared, reminded her of her daughter Shannon. Shannon is one of the angels watching over him. I remember sitting by Ramsey's bed, when I couldn't hold him, and I couldn't yet cover him with it. So, I held it. I spread the small quilt over my legs and let it comfort me. I was covered with love.

Butterflies in memory of Shannon and a cute mask.

Ramsey: Strong Soldier

Now, it is our turn to cover Kate with love. Kate has faced the unimaginable in her young lifetime, and she is about to do it again. She was just diagnosed with breast cancer. She and her husband, Steve, who have grown so accustomed to helping others now need our help. Can you join me in praying for Kate and her family? Let's show her that her good deads have not gone unnoticed. Let's overwhelm her with prayer. Let's cover her with love.

Show your support to Kate and her family on their Facebook page!
Watch this great story on Kate!

Terrific Two's

Ramsey turned two on January 12! Like every day since we knew he was a survivor, we spent it feeling blessed and extremely thankful for both of our boys. Reed also had a birthday; he turned 5 on December 16. We celebrated their birthdays together this year, with a New Year's Day/Birthday Celebration.

A giant balloon "ball drop" was filled with candy surprises.

Grandparents (and Aunt Veta) having fun in their glasses LOL!

At a recent gathering (following my dear Aunt Doris's funeral), the boys had the chance to play a little basketball and to run to their hearts content. Surprisingly, all of that activity had little effect on Ramsey's breathing. Take that CDH and Asthma! To me, this picture taken that day says it all...there's nothing stopping our little guy! He's got high hopes...

He even got to meet his CDH supercousin, Tyler. Finally, the family hero's met!

Ramsey loves trying on everything in site. We're talking shoes, hats, gloves, headphones, safety goggle, and yes, even toy kitchen tongs.

We love our two terrific boys!

 

Bungee Jumping and Superheroes

Ramsey had 2 appointments this week at children's. First, he had a CT scan as a follow-up for his spinal anomaly followed by a review with neurology. The fusion of his skull to his spine hasn't changed much. His symptoms are mild and we won't need to follow up again for two more years. At that point they will do flexion x-rays. We weren't surprised to learn that we'll need to limit his physical activities due to the risk of spinal injury. That means no football, wrestling, trampoline jumping and yes, no bungee jumping, ever. I hope he'll have enough interest in other activities that he won't mind the limitations. I wonder how he'll feel to learn he can't do those things. Also, I worry about unexpected accidents. We returned home from CHP that same day and he fell over the arm of the couch right onto his head. These things worry me. I know with time my fear will fade. I know that I could unknowingly have the same spinal anomaly...any of us could, but knowing about it somehow makes it scarier and googling it does too. Google is good for a lot of things but not health concerns!

Ramsey also had a chest x-ray and appointment with his surgeon. His lungs look great! His diaphragm looks great! He's just an all-around awesome almost two year old.

Playing at RMH between appointments

We were happy to see some of our NICU friends. Most of them hadn't seen Ramsey since his discharge. They were AMAZED at how good he looks. That he walks. That he talks. He breathes and eats and does all the things odds said he might not do.

Our NICU friends are everyday people but every day they have the chance to impact lives. In my mind they look something like this:

They save. They encourage. They entertain. They bond. They say good luck and sometimes they say goodbye. I don't know how they do it, but they handle the ups and downs and still return to work everyday, ready to do it all again. Call me corny, but they're my heroes. They inspire me and I'm proud that they remember my little superhero as one of their successes.

This is how I say "Cheese"

CHEEEEEESE!

Ramsey loves his construction hat!

No Pain. No Gaines.

Ramsey had a follow-up recently with his surgeon, Dr. Barbara Gaines. He is doing so well! The surgery never slowed him down. Some swear that he's brighter and he's even had fewer problems in the poop department! (LOL, my sister and I were just questioning why our kids always talk about poop and now I'm doing it too) 

Dr. Gaines has been with us since day one. Looking back, it's great to see the transformation in her demeanor; it has everything to do with how far he has come.  We knew Dr. Gaines would likely perform Ramsey's surgery; hearing from several nurses that she would be THEIR choice to operate on THEIR child was a huge relief. Knowing that she had also completed surgery on my nephews and a friend's child was also encouraging. I remember the morning rounds, and specifically our conversation following Ramsey's repair. As her team stood behind her beaming from ear to ear, she remained quite serious, nevertheless pleased with the outcome of the surgery.  She knew he still had a lot of progress to make.

As the months have passed and Ramsey continues to do well, it is so awesome to celebrate with Dr. Gaines. She shares that big smile of relief. I look forward to our appointments and I would imagine that she does too- patients like Ramsey are a victory.  I was amused on the day of his recent surgery as she exclaimed, "this is so exciting"! I wouldn't have thought to use those words regarding my son's surgery, but in the scheme of things, it WAS exciting. Dr. Gaines was thrilled, even relieved, because she remembered how fragile he used to be. She knew all too well how things could and did change from moment to moment. She recalled the day he came closer to being placed on ECMO than anyone has ever come. The surgeons were prepped and ready until his oxygen improved so much that they realized, "this kid doesn't need ECMO". That's my amazing child for ya! 

Soon, Dr. Gaine's says we won't even have to worry about Ramsey. I assured her that will never happen. Still, it's good to know that from her expert standpoint, it will.

Thank You! Thank You! Thank You!

We are thrilled that the Ronald McDonald House collection in Ramsey's honor was such a success! Our goal was 61 bags. We have enough for 70+ well-stocked bags. I can't say thank you enough to each of you that have helped to make this a success! We couldn't have done it without the help of friends, family, churches and businesses who supported the project. In addition to the products that were donated, we received enough in monetary donations to purchase custom tote bags! We also have enough money left to purchase a few items that we still need, and possibly some extra to go towards preparing a meal for the families at RMH on the day we deliver the bags. We hope to prepare the bags in April and deliver them in late April or early May. We're so excited to support over 70 families in Ramsey's honor!

My basement is packed with donations!

Ramsey displays some of the goodies!

Now, about the bags...you may remember the logo I created to raise CDH awareness and prayers for Ramsey. We used it on Facebook and even ordered cute buttons that our family, friends, and eventually the staff at Children's Hospital wore in honor of Ramsey.

We were (and still are) amazed at the immense support we received. As I planned this project, one thing I wanted was a way to allow other families to praise and honor their loved ones...to share their story, to request prayer, to seek consolation from other's who have walked in their shoes. That's when the idea for the tote bag graphics came along.  I modified the "Rooting for Ramsey" logo so it just says, "Rooting for _______". Each tote will include a marker so the family can fill in the blank with their child's name. I had tags made to attach to each bag that briefly explain why we wanted to honor Ramsey. They invite each recipient to visit our new Facebook page, Rooting for a Reason, to share their story. I hope the page might grow so each family can benefit from the support and prayers of others just like we did!

Medical Updates

Ramsey had his annual well visit this week. To my surprise, he had lost weight. We're hoping it's because he is so active now. I am discouraged that sometimes, it's obvious that he just doesn't want to eat. Other times, he eats like a champ. I had taken him off of his reflux medication, thinking he was past that. Now, I am wondering if that is part of the reason why he turns his head to certain foods. His pediatrician said not to worry about the weight loss; she wants to see him in a month to weigh him again. We are now giving him pediasure and things like buttered noodles and buttered bread to put on the pounds.

He began coughing this week, and two nights ago, he woke up with a fever. As the day progressed, the fever became worse so we took him to Children's just to play it safe. (Why do kids always get sick on the weekend!?) They checked his oxygen and it was good. Next, they did an X-Ray which was clear. We can treat this as a standard virus and hopefully he will be better soon! He just woke now and his fever was back up to 103. It's so unnerving to hold him and to hear how hard he is breathing.

Hope our little guy feels better soon!

Gift of Giving Update

It has only been one week since Ramsey's birthday and we are already receiving a great number of product donations and a few cash donations too!  See below for a rough count of the items we've received. Also, a couple new items were added. I will try to update the "Gift of Giving" page as donations come in.

If we are able to make more than 61 bags, then GREAT...we'll do it! If we end up with extras of certain items, we will donate those in addition to the gift bags. Also, if we have extra of certain items, we will give a couple per bag.

 Travel size products:
Deodorant -   Mens 6, Womens 10
    Shaving Cream Mens 8, Womens 4
Razors Mens 22, Womens 15

Soap/Body Wash 63
    Shampoo 30
Conditioner 8
Toothpaste 14
Toothbrushes 25

Body Lotion 31

Lip Balm 10 +61 more on the way!

Brush/Comb 7

Tissue Packs 36

Hand Sanitizer 13

Notebooks 5

Pens 45

Game/Puzzle Books 2

Disposable Cameras 0

Gum/Candy 9

Slipper Socks 0

Room Decorations 0

Cards 0

Dish Soap

Sponge or Dish Cloth

 

 Other donations we've received: 

Bath Poofs - 61 are on the way

 Hand Lotion 129

Pads

Nail Clippers

Shower Caps

Q-Tips

Cleansing Towelettes

Hair Spray

The Adventures of SUPERRAM!

Celebrating Ramsey's birthday was pure joy. We invited family and a few friends to our home to commemorate the big day.  In my heart, I wanted to invite everyone- our extended family, our friends, our new CDH "family", every nurse, doctor and contact we made from Latrobe to Pittsburgh and of course, everyone who reads this blog. Still, I knew it was best to hold back. Perhaps if it was summer, I might have given in, but it's January and it's germy.  In my heart, I know each of those people are celebrating with us as they have celebrated his success the whole year through!

Before I share some party pics, I need to backtrack to Thursday, his actual birthday. I woke up feeling incredibly anxious. I'd say I fell just short of a meltdown and I really couldn't explain why. Then my friend Liz (mom of Case), sent a text message. It said, "Do you feel extra emotional today ;)". Apparently, her NICU telepathy told her to reach out to me. She said she felt the same way on Case's birthday, and she "meant to warn me", but forgot. (Thanks Liz; I'll remember that - LOL). Liz and I decided that it's not just a fluke that we both had supercharged emotions on our child's first birthday. Yes we were, and are, incredibly happy to celebrate that first birthday but we couldn't help but feel a bit out of control. If you're a NICU mom anticipating your baby's big day, don't be surprised if you feel a little off! And don't say I didn't warn you :)

Now, back to the party details. Since Ramsey is so super, we celebrated with a superhero party. The pics say it all....Happy Birthday Ramsey!! We love you.

The Invitation

Cape Kits!

CDH superhero capes!

That doesn't look like oatmeal!

What do I do with this thing?

Ramsey desperately wanted to help decorate the capes

SuperDino borrowed Reed's cape

If I stick out my tongue, maybe I can fly!

Ramsey checks out the Ronald McDonald House donations