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!

Love Letter

As most of you know, the Pittsburgh Ronald McDonald House was our home during Ramsey's hospital stay. (We look forward to delivering 70 bags there next week!) The Ronald McDonald House produces a newsletter called LoveLetter three times a year to keep friends of RMHC updated with the happenings of the organization. This November I was surprised when I received a phone call from RMH. They asked if I would write an article from our family's perspective about "the house that love built". The article was featured here, in the Winter 2012 Newsletter.

Look who's walking

I love watching children grow. Each stage brings a new set of exciting changes and every new word or deed, though often simple, never cease to impress. Ramsey is 15 months old. He now weighs 20 lbs. He loves to sing. His favorite song is "Ya ya ya, Ya ya ya". As his vocabulary grows, the lyrics do too. He is learning body parts. The first thing we taught him was nose, so he now grabs everybody's! He loves giving kisses...I think they are kisses although it feels more like he is trying to eat my face.

He has decided to let go of the furniture he clung to for the last three months and WALK!  I shot this video tonight. He was tired and angry; he wanted the video camera.  (Please disregard the mess in the background...those blankets, well that's Reed's "tent")

"We will never be the same."

About a month ago, I took an ordinary trip to Walmart and found myself in tears, TWICE.  Yes, my readers- I have issues. First, I saw an adorable pregnant woman strolling along with her toddler in the shopping cart. They looked so cute...so happy, yet I couldn't help but wonder...is she really happy? Is her baby OK or is she carrying the weight of some dreadful prenatal diagnosis? Seriously, I have issues. I know it's crazy to think that way, but I couldn't help but remember the mixture of joy and fear while I was pregnant, knowing my son might not survive.

Next, I made my way to the checkout. A couple in front of me had a cute 18 month old daughter. We got to talking and I learned that she was adopted. She was taken from her birth parents at several weeks of age after they beat her, fracturing her skull and covering her body with bruises. Enter the tears AGAIN. I became so enamored with the couple that to this day, I wish I had the opportunity to talk to them again.

The following day, I eagerly waited to meet my friend Liz and her family. I first met Liz at the Ronald McDonald House while her son Case was also being treated at Children's Hospital. Case was born just a few weeks before Ramsey. Liz and I made arrangements to meet on their way home from some outpatient appointments at Children's. We greeted one another tearfully, then laughed at ourselves. Liz commented, "We will never be the same."

Liz is right, we will never be the same. We are stronger. Wiser. We are blessed. And sometimes, we are a bit emotional too. It's comforting to know there are friends, like Liz who understand.

This week, we had the pleasure of meeting Liz, her husband Dan, and their son Case for dinner.  We had a great time! It is so exciting to celebrate the lives of our sons together.

Read Case's blog: A Very Special Case.

Happy Easter!

I hope you all had a wonderful Easter! Our plans were a bit derailed since both boys are fighting colds, but all in all it was a good day. Here are some photos of our weekend. Check out the stuffed toy in the last photo; it's a set of lungs from a company called I Heart Guts. It is strange and adorable at the same time, but I couldn't resist it...I thank God every day for Ramsey's big beautiful lungs. Boy does he know how to use them!

Reed has his first chocolate of the day

Think the chocolate kicked in already?

My boys love sticks....

...and they love each other.

Think he likes hard boiled eggs?

Peek-a-Boo!