It's about Sharing

On thursday we played Santa as we delivered roughly 200 toys to Children's Hospital of Pittsburgh on behalf of Rooting for a Reason.  We owe this to the generous individuals and businesses who came together to bring smiles to patients this Christmas! Thanks to everyone who sent their toys to me, to Liz McNulty, and to our drop off sites at Studio 2 Advertising, Aw Else Boutique, Doud's Furniture, and Community Pediatrics Natrona Heights. 

The McNulty "Elves" in front of the toy donations.

On the morning of the delivery, Reed woke up with pink eye.  He was so bummed to miss out on the toy delivery and a birthday party planned for him and his buddy Case. I was disappointed too- I wanted to him to experience the joy of giving. Still, I was relieved that our greatest problem for the day was only pink eye. I kept Ramsey home as well, just to be safe. 

We're trying to teach Reed the importance of sharing and saving. When Ramsey was hospitalized, a sweet 4 year old gave him his own birthday money.  All who came to his party were asked to bring a few dollars instead of gifts. The money was placed into three jars- a save jar, a share jar and a spend jar. When asked if he wanted to share the money with Ramsey or with an animal shelter, he picked Ramsey...and threw some extra cash into the jar! We decided to get three similar jars for Reed.  We made three banks labeled share, spend, and save. He calls the spend jar his "tractor store" bank because he loves to buy toys from the Tractor Supply Store.  We've been a bit disappointed (and slightly amused) that his spend bank is much heavier than the other two. I hoped that he would learn the lesson on his own, without us pushing the issue.

As we prepared the toys for delivery to CHP, my proudest mom moment occurred. Reed gathered 10 envelopes along with his "spend" bank and put a handful of money into each to give to the "sick kids".  That spend bank might remain the first one that he fills, but if he's willing to share it then I'm a happy mom! 

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!

I wonder

I'm surprised by how much time has past since I last blogged. Even more amazing to me is that Ramsey will be two soon- January 12! December 2nd will mark the Anniversary of my preterm labor and the bed rest that followed. It's hard to believe that I rested for 6 weeks. I have to admit, that sounds pretty appealing right now!

I wonder if Ramsey remembers anything from the beginning. Maybe remember isn't the right word, but I question if he already knows what a miracle he is. I love introducing him to people who prayed for him along his journey. Often, they notice how his smile rarely fades. Recently, he visited our dear friend, 95 year old, Miss Honey. I love how easily he brings joy to others. That smile of his is contagious!

Ramsey loves dishing out hugs and kisses, but he doesn't like to be held. I wonder if that's just the type of person that he is, or if his NICU experiences made him that way.

Tonight, he fell and got a little "boo boo" (one of his favorite words). He wouldn't let me comfort him. Instead, he ran away crying. I just wish he'd let me cuddle him! I suppose his toddler energy has something to do with it as well. Even with all the chairs pushed in, he still manages to sneak up on the dining room table and give the chandelier a little swing or throw some food into my centerpiece. He's quick!

Several weeks ago, before the weather turned cold, we had some fun times playing in the backyard. The boys loved the leaves....

As the sun set and we headed inside, Reed and Ramsey ran together through the yard. And it hit me. That was THE MOMENT...the moment Dennis and I both imagined nearly two years ago. On that day we knew for certain that Ramsey would survive. That just might have been my favorite day in the NICU- learning he was out of the woods.

These are a few of his favorite things:

Mickey!

Cousins!

Coloring!

Doc McStuffins!

Christmas Gift Collection

We want to continue the tradition of helping and encouraging others just as we were supported during Ramsey's sickness. Along with the help of Ramsey's buddy Case's mom (please LIKE his new Facebook page), we are spreading smiles this Christmas season through our project, Rooting for a Reason.

We're Rooting for Patients!

We know first hand how hard it is to spend time in the hospital beside a sick child. We also know the warm feeling that spreads through our hearts when someone comes to our sweet child's hospital room with a gift. This Christmas, please join us in spreading smiles to patients at Children's Hospital of Pittsburgh. We'd like to donate Christmas gifts to the children who can't go home for the holidays. From now until December 13th we'll be collecting donations. Please view these gift suggestions from Children's that are sure to make a little boy or girl smile this Christmas. Please note, in the hospital, infection is always a risk. To protect patients, the hospital can accept only new items or those items that are clean and in excellent condition. We appreciate your support and know how meaningful this gesture will be to patients and their families. We'll be rooting for hope and spreading joy to those not able to be where they should be for the holidays...home.
 
Paypal donations can be made below and will go directly towards the purchase of items from Children's suggested wish list.

Pumpkin Patch!

Despite the cold rainy weather, we had a great time this weekend at a local farm. We picked pumpkins, ate some awesome baked goods, and let the boys play a bit before returning home to carve our selections. I found some Halloween music to listen to while we carved them. Reed proved he takes after me when he belted out the wrong words to ghostbusters. His version: Go Buster!!!

Ramsey loved running through the pumpkin patch despite tripping over every loose vine and face planting off the picnic table onto the wet grass (not my proudest mom moment).

Amazing Case

We love our NICU/RMH friends, the McNulty's! Their son Case was born just a month before Ramsey. I met his mom Liz in the halls of RMH; we were meant to be friends. Our journeys have been quite different, still we share that NICU bond. Liz and her husband Dan have 4 beautiful children; they have three daughters: Meredith, Samantha, and Lainey...and of course their son, Case. Their blog is: http://averyspecialcase.blogspot.com/

Case is an amazing, joyful, loving boy and I'm honored to be a part of his life. Recently we visited the McNulty's and our kids finally got to spend some time playing together. Yesterday, we joined them for a special benefit in Case's honor. A group called the Burgi's Low Life Riders organize an annual 100 mile motorcycle ride. All proceeds benefit the family of a special needs child. This year they selected Case and a 3 year old named Tiffanie. We met up with all the riders at the end of the day for a great meal and celebration of both children. Liz would say that it doesn't take much to make me cry, but when I saw the police escorted group of motorcycles (hundred's of them) arriving to celebrate Case, well I couldn't help but cry some happy tears. I can't think of anyone more deserving of the honor. 

Backyard fun

Case is a hugger :)

Liz and Case at the Benefit

Case's first "Ride"

Fierce!

Dennis and Dan

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.

Home Sweet Home

Ramsey awoke on Saturday as if the surgery had never happened! He was happy and eager to walk and leave the hospital room. We gave him many wagon rides and he said "Bye" and waved to everyone he saw. He ate a bit more and his pain was controlled. We were discharged around lunchtime. Ramsey got to have one last visit to Ronald McDonald House before we went home and he even tried to help us clean. (I'm sure that wasn't part of his discharge instructions!)

He loves his new Snoopy!

Post-Surgery Update

Today wasn't easy for our buddy. I've never seen Ramsey in so much pain. They suspended his epidural and when he awoke, he was feeling pretty rough. They gave him Oxycodone just prior to stopping the epidural, but he needed something more and when we tried to administer Morphine, his IV wasn't working. Luckily, as we waited for a new IV, he settled enough that we didn't have to give the Morphine. By this afternoon, he was finally happy enough to bear the pain. They removed the epidural, the catheter and all that other junk he was carrying around. With his new-found freedom, and better mood, we were even able to take him for a short walk and visit to the playroom. Hopefully we can bring him home this weekend.

We stayed at the Ronald McDonald House the night before the surgery. It was fun to have Ramsey stay there with us for the first time. Both Reed and Ramsey were so excited, you'd have thought we were on vacation. Ramsey decided crawling under the sofa bed was a good idea...

We played a bit the morning before the surgery at RMH and in the pre-surgery waiting area. Thank goodness for these distractions because Ramsey was HUNGRY!

Even Daddy had a good time in the playroom!

This is me as the marshmallow man

Wednesday night, RMH hosted a luau on the patio complete with entertainment. As you can see Reed had such a good time he didn't make it to see the end of the party...

This photo is begging for a caption!

We even had dinner with Case and Liz...we love them!

As always, being at the hospital helps to bring things into perspective...it reminds me how blessed I am. I look around and see other patients and their families enduring unimaginable and varied trials. I witness spoken and unspoken pain. Sometimes, the aching is even hidden behind a smile. Still, I see goodness, and joy found in healing and in miracles and I remind myself once again, how lucky I am to be taking Ramsey home.

Surgery went well

Ramsey's surgery went well. He actually woke and stood up
in the recovery room! He is resting now in his hospital room.

In surgery

They took Ramsey in to begin the surgery at 12:00. The surgery is for a ventral hernia (abdominal hernia). Nothing like his original hernia... We expect to be here a few days until he is discharged. We had two updates already and things are going smoothly!

Angels Among Us

Ramsey is himself again. It's so great to see that smile on his face. He is entertaining and bright. The more he learns and begins to communicate with us, the more amazed I am. I can't explain why...it's not as if I expected any less from him. I believe it's just that his life and his survival as a whole still amaze me. He didn't just survive, he thrives.

Last week, when he was hospitalized, every one kept telling me how strong I was, how sorry they were, and the like. At the time, I felt unaffected by the circumstances, that is, until the morning of his discharge. Ramsey was napping so I decided to steal away to the cafeteria. As I entered the elevator, there was a man hauling a cart filled with breast milk storage bottles and a cooler. That's when it struck me; his wife ran out of storage space in the freezer! During Ramsey's stay in the NICU, I too ran out of room in the freezer. I remember being both mortified, saddened and slightly amused when they told me I had to find another place to store it. Some acted like I was a lactating superhero, but that had nothing to do with it. Until my son was able to drink, of course the supply would accumulate. As I stood in the elevator, I felt speechless. I remembered so many moments, and I couldn't help but wonder what the "milk man's" story was.  Bottom line- his wife and child had likely been there for a long long time.

As I headed back to Ramsey's room, I heard a familiar voice in the hallway. It was the voice of the doctor on duty the day Ramsey almost needed ECMO. Like that day, his words became a blur; again I was taken back to those first fearful days. Something told me not to look back.

We brought Ramsey home that afternoon, and guess what happened?  He grabbed my cell phone and suddenly the song "Angels Among Us" started to play. I don't believe that was a coincidence. Next a silly kid song called "I Need a DOG" came on....(OK, I don't think there was any hidden message there). BUT, the next song was even better: Rascall Flat's "I Won't Let Go" played. "I Won't Let Go" was released prior to Ramsey's birth. A local CDH mom shared with me that she followed our blog and that she prayed that her angel, Logan, would watch over and protect Ramsey. She felt that the song was Logan's song for Ramsey.  I am comforted to know that there are angels among us, and I would bet one of them is him.

A Hospital Stay and Asthma Diagnosis

Ramsey's cough began early this week. A day later, he sounded so bad I knew something was wrong.  We took him to the local ER where they quickly discovered his oxygen was on the low side (it should preferably be 93 or greater; it was falling into the 80's). To me it didn't seem quite so alarming compared to his NICU days when 80 was good. I recalled the near ECMO day when his oxygen dropped in the 30's.  Still, I didn't want my little guy to be so sick and so upset. Aside from the coughing he was developing a temperature. He threw up several times in the triage area, possibly because he was so distressed over just being there. Let's just say he has an aversion to most scrub-wearing individuals.

We spent several hours at the local ER. They gave him an IV for some fluids and offered some albuterol to help with the breathing. Next, they decided to transfer him to Children's Hospital. Based on the stormy weather, Ramsey's history, and the fact that he was borderline critical, they decided to transport him by air. In typical fashion, I casually told my family that they were "flying us there". I couldn't bring myself to say they were life flighting him. I know it was partly because I knew he was going to be OK, and partially because those words would cause sheer panic to anyone that heard them.

In the midst of it all, my husband Dennis made a surprise phone call from his trip to Canada, near Saskatchewan. We live in PA....so we're talking 2,000 miles apart. I was tempted to lie, instead I told him where we were. I believe at that point, Dennis had a helpless all-out meltdown while Ramsey and I prepared for our flight to Pittsburgh. I told him Ramsey how lucky he was that we were sharing our first helicopter ride together but he wasn't buying it. He did not enjoy the ER experience. The transport team arrived, and ironically we recognized one another; they had also attended church many Sundays at he hospital. They were absolutely great. They assured me Ramsey would fall asleep once he was lulled by the vibrations of the helicopter and thankfully they were correct. The flight was 10 minutes long and he slept the whole way. I can't lie, I was strangely tempted to take his picture on that helicopter...but I decided a photo opp was likely inappropriate.

We arrived at Children's and spent several hours in their ER giving Ramsey more albuterol before receiving a room at 4:30 am. Fortunately, Dennis was vacationing with the husband of our original NICU nurse. (Let's just say Dennis made a bit of a promise as she tended to Ramsey that first critical day) She contacted the hospital, and with my permission, they were able to release info. about his status. She was able to calm Dennis and to confirm that he didn't need to find a way to rush home.

They kept Ramsey for two nights. They determined that he had a viral infection that triggered Asthma. Also he had an ear infection that was causing the fever. Finding out he has asthma was not so much a surprise. I've expected it all along. I just hope that it remains a mild form of asthma, that he will outgrow it and that we will learn when/how to properly treat him.

I have to keep reminding myself that Ramsey's surgery is still approaching. I had been preparing for his hospitalization and now a part of me feels like we already got that over with. June 20 will be here before we know it.

Being at the hospital brought back all sorts of memories...I'll save that for my next post!

Prep, Delivery, News, and Surgery

I have enough information for 4 posts. Here's a quick summary and a lot of photos!

The Preparation:

Last week, with the help of some great volunteers, we assembled 70 bags for delivery to the Ronald McDonald House. These friends and family were among the many who helped us during Ramsey's hospital stay so it was great to have them with us while we prepared to honor him!

Artwork thanks to Reed and fellow students at Barbara Thompson!

 

I had a little photo shoot with Ramsey...well based on the volume of photos, I guess it wasn't exactly little. He was so cooperative and offered all sorts of unique expressions. 

The Delivery:

Today I woke up feeling almost as excited as a kid on Christmas morning. We were finally set to deliver the bags, and that just made my day! Our family made the trip along with my mom. Big brother Reed was happy to help and so excited to visit both Children's Hospital of Pittsburgh and the Ronald McDonald House. He sees both locations as one and the same...he sees them as a happy place.  He watched in anticipation for the colored "stripes" of the hospital. It is a beautiful building inside and out and somehow, Reed looks forwarded to visiting it like it is more of an entertainment venue than a hospital. "There it is...we're here...I love Ronald McDonald", he exclaimed.

We were happy to talk to and provide the bags to the same staff that worked at RMH during our stay there. They might distribute them this summer at a Luau party on June 20. When you See the end of my post, you'll see just one of the reason that date is perfect.

The News:

Marie McCandless, news editor of our local paper, the Latrobe Bulletin, featured an article about Ramsey and the welcome bag project. I'm thrilled for the awareness that it raised!!

The Surgery:

Ramsey had a checkup with surgery today. His X-Ray looks good. He still has a curvature of his diaphragm, but the patch seems to be holding well. His doctor feels now is the time to do the surgery of his abdominal hernia. He has proven that his lungs and heart are functioning well and that the chance of any pulmonary hypertension is slim. His surgery will be June 20th (the same day as the aforementioned Luau Day at RMH). His stay will be about 3-5 days. To be clear, this does not mean he reherniated. The patch on his diaphragm is still in place. However, Ramsey has a hernia on his belly. When they repaired his diaphragm and moved his stomach and bowels where they belonged, there was essentially not enough room for everything in his tiny, once empty belly. Thus, they used a mesh patch to help. As expected, the mesh patch is no longer doing it's job. His surgeon will operate at the original incision site. Now, he has enough extra skin and room to reconnect the muscles/lining of his abdomen without the use of a patch. In essence he'll be having a little tummy tuck. The results? No more giant bulge on the left side of his belly. Hopefully greater ease with bowel movements. And quite possibly, a lesser scar than he already has. Thank God for cool surgeons!