Tuesday, May 27, 2014

"I do everything a little differently because you were here;"

"Your short life has shaped my existence forever." 
-Jane Lloyd

One year ago today, my husband and I were driving back from grabbing a shower at the hotel and some food at Dunkin Donuts to make the hardest decision we have ever been faced with in our lives. As we drove down the roads that had become so familiar, we turned on 104.7 The Fish, looking for some sort of glimmer of hope. What we heard, instead, was the song "Even If" by Kutless. The words go like this:

"Even if the healing doesn’t come
And life falls apart
And dreams are still undone
You are God You are good
Forever faithful One
Even if the healing
Even if the healing doesn’t come"
Josh and I both looked at each other and knew that, despite what we desperately wanted, it was okay if the healing for Sawyer didn't come here on Earth but came instead in Heaven in the arms of Jesus. This wasn't an easy realization or one that we came to lightly. Over the course of the five days that Sawyer was on ECMO we desperately begged God to heal our baby and help him make a full recovery, but as the days went on we saw him slipping more and more away from getting better. After his initial open heart surgery his chest was cleaned out four more times, each time his condition slowly getting worse. Josh and I both knew that we were putting off the inevitable but had to hang on to some hope that Sawyer would get better. His EEG showed brain activity, but he was showing signs of sepsis, increasing blood loss, and continued seizures that they couldn't stop. Once we arrived back after hearing "Even If" we headed to speak with the doctors. They told us they had waited until the last moment to try a blood clotting medicine because if it clogged the machine, they would have to turn it off without giving us a choice. They had started it while we were gone, and it had done absolutely nothing for his blood loss. At this point we knew we were ready, well - as ready as we could be, to make the decision that it was time to take him off the machine and let him go. We had to sign some papers and we went to tell our families, which made things worse in a way. I hate seeing other people upset because it just makes my pain that much worse. We headed back around 8:30 to get the process started and hold our baby one last time.
I don't know how much of the night Sawyer passed away I have shared with those that have followed my blog and/or our friends, but here it goes. Josh and I went back to Sawyer's bedspace - 2121 - and had the curtains drawn around us, as every other parent was asked to leave the wing. Dr. Nicholson asked us if we were ready to proceed or if we would rather wait. We had already made up our mind and knew this was best for Sawyer because our poor boy had been struggling, to say the least, for the last 5 days and endured more in his 18 days than others do their entire lifetime. Sawyer was still connected to the ECMO machine and his chest was still open from the surgery (there was a covering over the opening to prevent infections, etc.). I sat in the same chair where I held him before surgery and they placed him in my arms. I remember several of the nurses on duty coming by and everyone that was assigned to work with Sawyer had tears in their eyes. Obviously I knew it was a depressing time, but the looks on their faces was a reminder of what a tragedy we were living. They let us hold him for a few minutes before clamping the machine. After they clamped the tubes, they all left. Everyone but Josh, myself, and Sawyer were left in the now curtain-surrounded bedspace that had been Sawyer's home. I'll never forget the look in Sawyer's eyes and Josh leaning over to say, "It's okay buddy, Jesus is ready and waiting for you and He is going to make everything better." At that moment I know Sawyer left us and went to be with Jesus. The came in to check his heartbeat and at 9:36 PM was when they knew he had left us. The left the room again, saying nothing. Josh and I held Sawyer for another 30 minutes before calling the doctors back in the room. We left to be with our families while they removed all of the tubes and wires and they told us it would be about 30 minutes. I haven't shared this picture yet, and I think what they say about a picture speaking 1000 words couldn't be more true. One of the nurses took this picture the night Sawyer passed away. I haven't looked at this picture in a while, but it sure does capture all of the emotional pain we felt that night, and still feel today.

As we sat in the waiting room with our families, I remembered that I didn't have any of Sawyer's outfits at the hospital or anything with me. My aunt and uncle ran the diaper bag down, and it had limited options. I chose one and we headed back to his bed space. It was so stark and empty without the machines. To see our precious baby laying there was a hard sight to stomach, but what a precious boy he was without all of those tubes and wires connected to his little body. Most people probably don't know, but our parents and siblings didn't get to hold Sawyer while he was alive. We tried to limit visitors and exposure to prevent infections or anything that would jeopardize his surgery. Looking back I regret that, but we were doing what was best for Sawyer and we had no idea how things would end. We gave Sawyer a bath, put clothes on him, and wrapped him in a little giraffe blanket. We wanted our families to have a chance to hold Sawyer before we left the hospital to plan his funeral. I scooped up my sweet boy and we followed the nurse down a never-ending hallway to a backroom while they went to go get our families. They told us we could stay and spend time with Sawyer as long as we wanted, but after our families had a chance to hold him and we were alone for about 30 minutes, we decided it was time to go. We knew that was just his body, and that Sawyer was now healed in Heaven. Unfortunately no amount of time spent with him would bring him back and we were both so exhausted. Josh's sister took this picture while we were all in the room together.

As emotional as this picture makes me, I am so glad she captured it. Most families are blessed with family pictures without their babies attached to machines and wires, but this is our only one, and our son has already passed away. Some people may have their own feelings of us spending time with Sawyer after he passed away, but I don't care. Unless you have been faced with this unimaginable tragedy I suggest you keep your opinions on how you would handle it to yourself. I am so thankful for our families support on that day and now a year later. Josh and I have had our ups and downs emotionally, but I am so thankful this has brought us together instead of tearing us apart. My expectations of life and how it 'should' be are so different than what is actually happening. Over the last year I have learned to trust God and His plans for my life, for our lives together. Losing Sawyer was not anything I would have EVER planned on, but I know that once I get to Heaven, God is going to turn over the messy strings and pieces of my life to reveal the beautiful masterpiece He was working to create through my life.

As time progresses my grief is easier to handle. I have found ways to deal with losing Sawyer that help my grief, rather than hiding in a hole or trying to avoid it altogether. I still wish I spent the last year raising a baby and sharing the same motherhood experience with my friends who have recently had children. I am still a mother, but I have spent the last year experience motherhood very differently. I have learned that it makes people uncomfortable and awkward, but through that I have been able to easily see those who have more than reached out to try and understand my differences and my hurt. I have spent the last year trying to keep my baby's memory alive, and I think I have done a pretty good job of continuing his legacy to bless other people. 

I drove to Egleston today with my mom to drop of the art supplies. Josh and I were completely blown away by the multitude of donations and were so excited to be able to bless other children and the hospital that took such good care of our baby while he was here. My emotional state was in overdrive this morning and I shed a good amount of tears. I wasn't sure why I thought going to Egleston today would be a good idea, but I had already told them I was coming so I had to go. I picked my mom up and headed that way. Once we got there they were also blown away by the amount of donations! They asked if I wanted to come inside and gave me the option to tour the CICU (where Sawyer spent his 18 days). Something made me say yes, and we headed upstairs. Unfortunately none of the nurses I knew were working except for one. I walked to where Sawyer was and suprisingly held it together. The space was empty, almost just like we left it. It brought back a flood of memories. Some good, some bad - but more good than bad because that is where we spent those 18 days with Sawyer. Here are some pictures of all of the art supplies. A huge huge HUGE heartfelt thank you to all who donated, these kids are going to have better days because of these art supplies!

*Some donations not pictured* Grand totals are below!
 The two little "people" in the front are Hope and Will. Steven, the donation coordinator, gave them to me for Rhory.
Steven, the donation coordinator, and the child life specialist at Egelston!

  Josh and I thought it would be neat to count all of the donations to give a "grand total". Here are the totals: 
Construction Paper - 43 (packs)
Markers - 53 (packs)
Crayons - 72 (in packs of 24)
Colored Pencils - 35 (packs)
Pencils - 9 (packs)
Glue Bottles - 10
Glue Sticks - 17 (packs)
Paint Brushes - 7 (packs)
Paint - 17 (packs)
Modeling Clay - 2 
Scissors - 22 pair
Chalk - 1 
Pencil Sharpeners - 4 (packs)
Erasers - 3 (packs)
Pens -1 pack
Doodle Pads/Note Pads - 17
Playdoh - 11 (packs)
Beads - 13 (packs)
Pipe Cleaners - 10 (packs)
Suncatcher Kits - 8 
Kids Art Set - 1 
Coloring Books - 8
Sticker Packs - 5
Bubbles - 9
Chalkboards - 4
& a lot of other miscellaneous items including felt, foam, and foam stickers!

Again, thank you ALL so much!

Being able to take these donations to Egleston made today easier to handle. Knowing we were paying it forward in Sawyer's honor was a blessing in itself. We have made it through a year, which means we are a year closer to being reunited with Sawyer. I know that some may think we have crossed the one year mark so surely life will be easier, but I don't think that is the case. I don't necessarily think the second year will be harder but I do think we have reached the point where most, not all, people think we will just be okay so they stop caring or start thinking we should just have all our crap together. I think once Rhory gets here it is going to add a whole new dimension to our grief levels. We are so appreciative of your prayers and ask that you continue praying for our family, Rhory, and the new dynamics we will take on in September as a family of four with one missing member.

"I will not cause pain without allowing something new to be born, says the Lord." Isaiah 66:9
It's been a year since we said see you later, Sawyer, but we loved you then, we love you now, and we will love you ALWAYS.
Here is another picture I haven't posted anywhere, but I think it is time. This picture truly captures Sawyer and all of his wonderful features without those pesky tubes. This was taken the day of his funeral. Oh my word, what a beautiful, beautiful baby.

Until next time,

Saturday, May 24, 2014

Rhory: 24 weeks!

Yet again I am behind on pictures - but I have weeks 20-23 to include in this post!

I know that everyone has been wondering about an update on our last appointment and some details on what they found on the ultrasound. I had another appointment on Thursday and we have received all of the blood work results so we are ready to share what is going on! 

At our 20 week ultrasound they discovered that her bowels (stomach and intestines) looked "bright" on the ultrasound. I don't really know any other way to describe it that they looked more white than they should have been. The cause for this could be a myriad of things, and because of that Josh and I did not want to go in to details right then because even the doctors weren't sure what was causing them to appear that way. The option was presented for us to do an amnio (the procedure I had done with Sawyer where they stick a rather large needle in my abdomen to take out some amniotic fluid) or to do some blood work. Because of the risks associated with the amnio and the fact that the doctor seemed to think it was probably nothing, we opted for blood work. Some of the reasons for bright bowels have been linked to Down Syndrome, Cystic Fibrosis, any of the Trisomy's, or if I had a primary exposure to some virus. All of the blood work tested for that and they all came back normal! We are so thankful for your prayers, and thankful that the Lord has answered them. My initial frustration was at the fact they found anything and part of the reason we didn't share all the details is because in reality there were too many "it-could-be's" and too big of a chance it wasn't going to be anything.

90% of the time bright bowels have no explanation, but that is not something they can be conclusive on until AFTER she is born so they wanted to do the testing and blood work just to be sure. They will continue to monitor me closely and starting at 32 weeks I will go in for twice weekly testing, just like with Sawyer. I am definitely NOT complaining about extra monitoring because it means they are keeping a close watch and we get lots of 3-D pictures :) The ultrasound this week showed that everything looked about the same, maybe even a little less bright! The doctors seem confident that it is nothing, but like I said before - they won't know until after she is born so they will keep watching. For now my nerves are at ease and I don't feel as anxious about the initial discovery. My next appointment is with my regular OB on Tuesday for my gestational diabetes test - Yahoo!

Now for my weekly pictures!

Fun Pregnancy Information
How far along: 24 weeks!

Total weight gain:I have finally gained 1 pound! I am not to my pre-pregnancy weight yet, but I think I have turned the corner on all-day sickness!

Maternity clothes: Yes and no. Still wearing more non-maternity pants. Although, I went shopping for swimsuits this week and I think it is more depressing now than before! LOL

Stretch marks: Nope!

Sleep: Great! Not quite to the 'waking up every hour to pee' stage :)

Best moment of this week: School is out for the summer and I have survived my first year teaching!

Miss anything: Not particularly, still not eating much cereal!

Movement:Yes! We can see her moving all over from the outside. She is still breech and kicking me right in the bladder, all the time :)

Food cravings: Strawberries and sugar, granola bars, and recently - milk (CANNOT GET ENOUGH!)

Anything making you queasy or sick: Other than the smell of fish, I am doing pretty good!

Have you started to show yet: Yes!

Gender: Girl!


Monday, May 19, 2014

Picture Post: Congenital Heart Walk 2014

 I waited much to long to start this post, but here it is! Better late than never, right? :)

Our whole gang!

Starting off the walk!

Me and my crazy sister-in-law... or maybe I am the crazy one? ;)

Josiah! Me and his mom became friends before either of our babies were born.

Emma Grace got a free ride the whole walk! LOL

Dance Party!

I mean, what can I say?

Coming across the finish line to give James a high five!

Josh tried...

But had no such luck... Ha!
Josh and I were so blessed and blown away by all 47 people that came out to support us for the walk! Our team raised over $1,600 that will be donated to the Adult Congenital Heart Association and the Children's Heart Foundation! This was the first year for the walk and we are excited to participate again next year - hopefully with an even larger team!


Tuesday, May 13, 2014

Crayola Art Drive!

Many of you saw my post on Facebook about the generosity of Crayola, but here is what happened for those of you who missed it. We had the idea to collect something to take as a donation in memory of Sawyer on May 27, 2014 - an exact year since he passed away. I reached out to them to get some ideas on what would be beneficial in terms of donations, and the idea was given for art supplies. The child life specialist works with the kids on a daily basis to make sure their stay is as fun as it can be and they are always in need of art supplies. I reached out to all of the major companies I could think of; RoseArt, Cra-z-Art, and Crayola.

I received responses from all of them, but Crayola's really blew me away. All of the companies have regulations as to where they can donate if it is not a non-profit, usually within a certain distance of their main office. Since we are not in that range and we are not a non-profit, there wasn't much they could do other than send us through their donation links for non-profits. We waited pretty late to start this process so I didn't have time to try and link up with a non-profit. Other than Crayola, the responses were fairly generic. Here is the whole email I received from Crayola:

"Dear Ashlyn,

Thank you for your donation request and for sharing Sawyer's story with us. We love the idea of wanting to "pay it forward" to the hospital where Sawyer was born. I can recognize what a difficult time the past year has been, but when I was reading your blog, I was very much struck by your expressions of faith and gratitude.

Crayola's community relations program makes charitable contributions to non-profit organizations in Lehigh or Northampton Counties in Pennsylvania, and the city of Phillipsburg, New Jersey. Further information is located at http://www.crayola.com/faq/donations/who-do-we-contact-to-request-a-donation-in-the-us/.

When an exception is made and a CRAYOLA product donation is given to a qualified 501(c)(3) non-profit organization outside our area, it is generally coordinated through Good360, the world’s leading charity in product philanthropy. If you would like to apply, please visit the Good360 web site at http://www.good360.org or send a written request to:
1330 Braddock Place
6th Floor
Alexandria, VA 22314

In the meantime, Ashlyn, we'd like to help you get this project started, even if in a small way. We are sending to you, via regular mail, several complimentary coupons to use toward the purchase of any Crayola products(s). Please note the expiration date printed on the upper right hand corner of the coupon. You can expect to receive them within 10 business days.
We so appreciate your contact. If additional assistance is needed, you may reach us by telephone at (800) 272-9652 weekdays between 9 AM and 4 PM Eastern Time or email by visiting Crayola.com.

Best wishes for more colorful days ahead, Ashlyn."
I was so blown away they had taken the time to read my blog and send such a personalized response! I received the coupons yesterday, and I CANNOT wait to go shopping! We don't have a goal for this "art drive", we just know we want to do something to bless the hospital that took such great care of Sawyer during his 18 days of life. Even if just half of my Facebook friends donated one box of crayons, markers, construction paper, etc, we would have over 200 items to take on May 27! If you would like to participate in any way we are just asking that you get the donations to us by May 26 (or our parents/siblings).

Items we are looking for (but any art supplies will do!):
Construction Paper
Colored Pencils
Pipe Cleaners
Ink Pads
As I said before, we don't have a goal for this 'project' but we sure do hope these items brighten the kids days while they are in the hospital. Sawyer obviously wasn't old enough to do any art therapy, but the child life specialists took pictures for us, helped us with a mold of his foot, and also with taking his feet and hand prints the night he passed away. If you are interested in helping by donating, please know that ANY number of art supplies are very much appreciated. I will be driving these down to Egleston on May 27 as our donation in memory of Sawyer on a day that will forever be a memory in our hearts. Please let me know if you have any questions or any possible contacts! Obviously we are not looking for just Crayola products, but I was so touched by their response so I wanted to give them a shout-out. Thank you in advance - we love you all!
Ashlyn (& Josh!)

Sunday, May 11, 2014

Picture Post: Sawyer's Birthday Dinner

I want to say a heart-felt thank you to our family and friends who came out on Friday night to celebrate and remember Sawyer for what should have been his first birthday. I know I didn't say much at the dinner but I knew it would just be me in tears through most of it. It was so nice to be surrounded by those that love us and love him and just be together. I didn't take as many pictures that night as I had intended, but oh well. In fact, the only picture of Josh and I at the actual dinner is a blurry one from my phone. The thing about pictures is that they really have nothing on the memories I will hold in my heart forever. I would be lying if I said this weekend went exactly as I planned. I was sorely disappointed by people I thought should be there, and weren't. I was irritated it was scheduled to rain for the walk (praising God it didn't). I got to the dinner late and forgot several things. My heart was completely broken for what should have been, and what was missing. All in all I tried my hardest to focus on those that were there for us and spend time remembering Sawyer. The devil is good at getting us to focus on the negative, it really pulls us down and away from God. Thankfully the Lord has blessed me with family/friends who go above and beyond for when others don't and they help me realize we are loved and so is our precious son.

We had Sawyer's dinner at La Cazuela in Lawrenceville because they have an upper private room that we were able to rent out. I made photo canvases for each table with different pictures of Sawyer and then we had a vase of sunflowers and a floating candle vase with floating red heart candles. I was so excited when I found those! I also turned my blog posts from last year in to a book and had it delivered the day before the dinner so our families would be able to see it - it was perfect and I can't wait to do the same this year! During the day Friday I made 72 cupcakes and decorated them each with sunflowers. They were by no means perfect, but made with a whole lot of love. Our idea was to have our families fill out cards for Rhory telling her all about her big brother. We also had a canvas with a heart stamp so that our families could stamp the canvas and sign their name. After dinner we headed to the grave site to release lanterns (people wrote on little labels to stick on the lanterns) and put out the pinwheels. 

I don't have a picture of all of the tables, but this was our table.

The banner reads "Happy Birthday" and the cupcakes have sunflowers on them.

We made little keepsakes for our family members with Sawyer's picture.
Unfortunately we didn't grab a picture of these the night of, so I am improvising.
The canvas is what people signed with the stamp, and the box is for Rhory. It
holds the letters that everyone wrote to her, telling her all about Sawyer.

My blog book in front, our "Sawyer" bear, and Josh and I's picture with Sawyer.

The only picture Josh and I got all night, but hey, at least we still look good!

Close-up of the cupcakes :)

Giraffes and sunflowers will always be my "thing" for Sawyer.
Then we went to his grave to release the lanterns!

Love, love, love the pinwheels

This is probably one of my favorite pictures. We all lit
sparklers around a circle and had a moment of reflection.

Spinning pin-wheels :)

Happy Birthday, Sawyer! We love and miss you more than anything.

Blurry phone picture, but love it.

 Look for a blog post with the pictures from the Heart Walk!