Happy 2nd Birthday Noah!!

Our Noah is two today!! I'm sure Big brother Dylan is excited that Noah is getting bigger, and probably more fun to play with ;)

I look to the other brother sets that we have the pleasure of watching grow up, and always think about how you two would be. I have no doubt that you are the best of friends up in Heaven, but I'd also guess that you cause your fair shares of mischief.

Today daddy and I decided to try something different. Since your birthday is in the middle of winter, balloons do not fair so well here in Wisconsin (as we tried any way last year). So this year we bought a chinese lantern.

We had our doubts...

This is made of a VERY thin paper that already had small tears (scotch tape for the win!) and we just weren't sure what to expect.

We went down to the lakefront to avoid all the houses and trees around, didn't want to set anyone or thing on fire!

And we made the trek down the ice covered stairs.

Then we tried to light it...

Daddy was getting more and more worried that I was going to get upset that he couldn't get the lighter to stay lit long enough, I could see the worry on his face.  (If you know me, I am not patient and I want things to work esp for special occasions.)

I was doing pretty good, but asked to take over.

I said a quick prayer, and tried at least 5-6 more times until I got that flame to burn long enough to light the wick of the lantern. But I GOT IT!

Happy Birthday sweet Noah. Mommy and daddy still miss you like crazy.  I know you don't want us to cry, but you have to understand it still hurts that you aren't here.  It still hurts to see the other babies continuing to grow, healthy and happy, when you aren't here.

I promise to be happy today. Today you blessed us with your birth, and the miracle that you stayed with us for two hours. Watch over daddy today too sweetheart.  He's driving up for a fun weekend with his cousins. I know it will be hard for him today, so give him a squeeze now and then. We had a quick cupcake for you this morning before we left to start the day. Hope all your wishes come true.

I love you to the moon and back, Noah!
Forever and always, our baby you will be. <3

It got stuck for a few moments...
but the wind quickly picked up and
took the lantern with

Finally wearing my diffuser necklace, but with an addition.
Both from a dear friend <3

 

Help us go out with a BANG!

 If you have planned on going to our auction in the past, and said to yourself that you'll just go the next year, this may be your last chance.

We have been asked by the March of Dimes to take on bigger roles. We will continue to walk every year, but our energy will be used in other ways besides our big fundraising efforts. With that said, we do believe this will be our last KickOff Party and Silent Auction.

So the time to come is now :) Help us go out with a BANG and hot our goal to raise $100,000 for the March of Dimes mission.

Invite your family, friends, neighbors and co-workers! The more the merrier! We'd love to have a HUGE turn out and enjoy the event as much as possible.

Here's a sneak at some of our auction items this year:

Gourmet Cupcakes! 

Autographed Football!

Spice Collection from Penzeys

Wine Goodie Basket

Buck's Tickets

And SO MUCH MORE!

So please come and help us go out with a bang! Share the event to anyone that will listen! And please walk with us in April!!

Devoted to Dylan's 3rd Annual Silent Auction!!

It's a month away!!!

We are so close to hitting $100,000 for the March of Dimes, that we are hoping this event will be our biggest yet! Please come! Please bring family and friends with you!!

Do you like cupcakes?!?

Grace & Shelly's donated 2 certificates for a dozen cupcakes!! You pick!

And if you'd rather get the cupcakes right away, there will be delicious Baked goods there to bid on and take home to feast on!

Are you a crafter?!?

Stampin' Up donated a HUGE prize to be won! (May or may not include any of the above-I'm not sure the specifics of what they are sending, but it is valued at over $200!)

Do you like the Green & Gold?!?!? (Umm who doesn't????)

How about an autographed football signed by the team at the beginning of the season???

And LOTS, LOTS more!!!

Dear Devoted 2 Jen & Patrick friends

As many of you know, a group of special friends put together a fundraising event/page to help Patrick and I get some answers and hopefully help us have a rainbow baby.

(rainbow baby meaning: a baby that comes after loss and pain, with the rainbow being the beauty after a storm)

With the funds that were raised and with an amazing genetic team battling our insurance company, we were able to get the genetic sequencing done.  If you recall, Dylan and Noah both had a unknown genetic anomaly.  The only way to potentially find this needle in a haystack, was to have genetic sequencing done.

I use a library analogy that seems to help people understand how difficult finding this "defect" was. Think of a massive downtown or University library.  Think of all the floors, the rows, and stacks after stacks of books.  Now I tell you to find the missing word.  I don't tell you the floor, the row, or the stack. I don't tell you the book or the page.  But I expect you to find it.


Now do you see how crazy difficult that task was?

I can't tell you how many people asked us, 

        "can't you test for whatever it is? There should be a test!"

Right, there should! But how do we expect doctors and modern medicine to know what an unknown is?! There ARE tests for KNOWN defects, and mutations. But that took time, money and someone having that defect.

So we knew there was a good chance that they still would not be able to pinpoint the exact problem. We sent out all the DNA samples they requested and then we waited...

                   and waited...


                                AND WAITED...

until we got the call to come in.

Now she called me and said we have the results, when can you guys come in? Those that know me well, know I am EXTREMELY IMpatient. I called Patrick and said, "ok, they have the results what time can you get here?" LOL.  He wanted to wait.

WHAT?!?! NO! We already waited months and months and we KNOW they HAVE the results! This isn't a "what is a couple of more days gonna do" type of situation here!

Patrick (thankfully) decided not to battle me on this (love you hon!) and came to meet me later that day.

THEY FOUND IT  !!!!!!




So what next?

Then we met with 2 different IVF clinics to discuss what our options were. One clinic was SO AWFUL at communicating they made the decision extremely easy.

The clinic needed to talk to IVF genetic lab to see whether or not they would be able to create a probe to test for the defect.  So then we waited again, which another possible road block.

We found out a day or so after Dylan's birthday, that the lab would in fact be able to create a probe and be able to pre-test any embryos that were made for the defect the boys had.

So next up, IVF meds and pokes...and pokes...

Poking yourself in the stomach repeatedly with needles, isn't that easy lol.  I was able to do it though, because I knew what the outcome could be and that helped motivate me.

We went through the pokes, and the egg retrieval.  They were able to get a handful of mature eggs that they fertilized and then again waiting.  We needed the embryos to get to day 5 and still look great in order for them to be biopsied and tested.

3 made it to day 5.

They were biopsied and then frozen and then...you guessed it... we WAITED.


They found out that 2 had the defect, and the one had another issue that made him/her not viable.


I cannot put into words how gut wrenching, earth shattering that news was.  It's just a constant soccer punch over and over, and at some point you feel like there's no way this could honestly be happening to us. Not after everything else.

WHY?????

I can't tell you why.

I can't even tell you the next step. Speaking for myself, I feel like giving up. How can I not? I'm sorry if that makes you disappointed or angry with/at me. But at some point you need to call UNCLE! Enough is enough!


Are we there?  I don't know.


We know there are other options, we don't need to have them listed to us.  We know we can try again, we don't need to be reminded.

We need to take time for us right now, and heal from this blow. Healing takes time.  I am picking my marriage and my husband right now.  I will not rush or force him to do something he isn't ready for, and he isn'y doing it to me.  To be honest, I'm not sure I can handle anything else.  Just being near or seeing anyone pregnant is like pouring gallons of salt into an open wound.

But I wanted to say a BIG thank you to all of you for helping us try. Thank you for giving us the support and the opportunity to try and have a biological baby. I have wanted to give you all an update sooner, but I just couldn't bring myself to type it all out.

And even though the outcome isn't what we all hoped for Patrick & I, you have all helped advance medicine and helped future parents have healthy babies without this mutation.  So THANK YOU <3

I'm still here

Sometimes you just need to take some time off and deal with some things. 

But I'm still here. 

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.

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.