Friday, October 17, 2014

3 years ago today...

I woke up this morning, knowing what today was.  It's not an ordinary day for us.  My phone was blinking and I have the habit of having to look...even though I figured it was so-and-so added a new picture, or updated a status (on facebook, for you non-fb'ers).

I was wrong.

There sometimes comes a time in a friendship, where they really become part of your family.  They hurt when you hurt, cry when you cry, and never judge you in your weakest moments.

One of those friends made this picture and posted it on my facebook wall, so that when I woke up, I would see it and know that it wasn't just me knowing what today was...

Today is a hard day, but it is also filled with the wonderful memories of taking Dylan home.  And the peaceful thoughts of knowing, he would not feel anymore pain or suffering but only the warmth of our arms and the love surrounding him.

Many tell me they are inspired by me and my strength, although I don't feel strong.  Many say, they wouldn't have been able to go through the pain and heartache we have and continue to go through.
I would have said the same thing.

But you have to know that your children would not want that for you. They would not want you in bed all day, crying and suffering.  They would want you to go on living.

So that's what we do.

But we had to take it a step further.

As many of you know we have created a March of Dimes team in the loving memory and honor of our three children in Heaven, Devoted to Dylan.  We started our team in 2012, and have walked the last 3 years.  We have people walking all over the country (as you can join our team, and walk in your hometown!) wearing Dylan's (and now Taylor and Noah's names) proudly.  Reminding Patrick and I that we will never be alone, and that our children will never be forgotten.

Over the last 3 years, we have been recognized as one of the top teams in our city, state, and even in the entire country. In our 3 years, we have raised $89,000 for other families and babies to have a healthy start.  This year, our goal is to raise $11,000 as that will bump us up to raising $100,000 in honor of our children.  Can you think of a greater gift?

If you have walked with us before, please walk again.

If you have thought about it, but didn't feel strong enough, please try again this year.

Please tell people about Dylan, and our team to help raise awareness of the March of Dimes and to help families become more educated on safe pregnancies and to help give all babies a healthy start in life.

Please visit our team page here, and sign up to walk with us or to donate to the cause.  All donations are tax deductible, so print and save your receipt! Please help us reach our goal of $100,000 for babies this year and be apart of the team that did it!

We are also trying desperately to find a location for our big Kick-off Party Silent Auction.  If you know any restaurants, or managers that would be willing to have us, please let us know!! We are also looking for auction item donations!

Please also share our blog! Post to Facebook/Twitter, tell you friends and family.  Please help spread the story of the little boy who changed our lives forever, and who's light continues to get brighter with every passing day.

Friday, October 3, 2014

Changing the World

As most of you know, from reading this blog, after Dylan was born he stayed at Children's Hospital's NICU.  I was not able to see him right away since I had to have a c-section and had to recover, and he was not stable enough to leave the NICU.

As you can imagine, there was a whirlwind of people in and out.  Checking in on me, checking in on Dylan. Poor Patrick had to run back and forth to update me on what was happening with Dylan, as I was still in recovery.

Right after Dylan was born, a doctor went to talk to Patrick about Dylan's lungs.  They hadn't fully matured and he needed help breathing.  He got some surfactant (Thanks to all the research the March of Dimes does!) to help get his lungs stronger. There was another doctor, a resident, there as well (Patrick remembers she was blonde lol).  However, Dylan was born in the midst of a doctor switch.  The attending doctors switch every 2 weeks and the residents every 4 and we are VERY thankful that they did.

Patrick remembers meeting *Sally (name changed for privacy), but he was still exhausted from the whole experience so the details are a tad foggy.  I should ask Sally what she remembers!

We didn't love the attending.  He was very cold, and I think both Patrick and I felt like just another cow in the herd...

However, Sally on the other hand, was amazing.  We could both tell right away that she took to Dylan right away and never made us feel rushed or that we were less important than any other family she was taking care of.  I for sure felt safe with her. I trusted her right away with my baby boy, and to any mother out there reading this, you know how difficult that is.

Because I have a strong science, and somewhat strong medical background, I was probably one of the most annoying NICU parents there. I made sure to get to the hospital early enough in the morning to hear the attendings round on Dylan, and as you can imagine, I always had a list of questions...Why are you giving A, B, or C? What caused his HR to dip down? etc... They learned quickly that I knew the terminology and had ZERO problem voicing any question or concern.  What I appreciated was they started making sure I was okay with the plan, and the treatment course. Checking to see if I had any questions before moving forward. Sally always came back after rounds to make sure we had a good understanding of what was going on, and watched over Dylan when we were home.

For those 4 weeks, we felt like Dylan was in the best possible hands possible all because of Sally.  We started up with a new attending 2 weeks in, and had to start all over with a new person learning about the in's and out's of treating our boy.  But we took comfort in knowing Sally knew all that and would speak up when necessary.  When her 4 weeks were up, we knew there would be HUGE shoes to fill and we were dreading the switch.  She wrote us a sweet card (that I still have!) and gave Dylan an adorable football onesie (even though she isn't rooting for the same NFL team--GO PACK!) on her last night with Dylan. We went home worrying about who would be watching over Dylan now.

Sally's next rotation was Palliative care.  The Palliative team at our local Children's hospital is the absolute best.  They are the most caring and compassionate people in the world, and not everyone is capable of performing this job. There are special places in Heaven for these people.  Even though Sally was no longer Dylan's NICU resident, we were being taken care of the Palliative team, and Sally came by every single day to check in on Dylan and me.

There was another doctor there that would take care of Dylan on the overnights and on some weekends, and we immediately liked this guy. There was no way not to like him.  Just a genuine, caring person, who shined from the inside out. *James (name also changed for privacy) was such a character.  He made us laugh or smile when we needed it, and he was caring and serious when we needed that.

Both Sally and James are in the right profession.  Sure smart people can go and become doctors...but you need that compassion chip and bedside manner that not all of them have.  And when you have a sick baby/child, you REALLY notice that missing chip. These two not only have the chip, but it oozes out of their pores! :)

We became close with these two doctors very quickly and bonded over loving Dylan, football, and food!  We learned later on that these two were actually dating!! And what a PERFECT match!!

We were honored to be invited to their wedding, and are honored to be their friends. They were there the day Noah was born as well, they wanted to meet Dylan's baby brother <3

Not too long ago, they became a family of 4 (no not twins, but because they also got a cute puppy!).
Sally sent me this email to tell me:

I'm sure I don't have to tell you that I was sobbing. I am again actually, re-reading it for the 100th time. I know I have said it before, but knowing that the child you lost lives on in the hearts of many, is the greatest gift of all.

Although our little boy was only here on earth for a short time, his work and love continues to shine through others.  I see it everyday.  October is another hard month for me, as it's when we said goodbye.  But I hold on to the promise that it is goodbye for now.

It's amazing to think of the people that have come into of lives because of Dylan.  We would have never met Sally and James, and other wonderful friends that share the pain of losing a child.  We are so blessed to have them in our lives.