Four generations

We spend a lot of time with my grandma whom Reagan now calls GiGi.  It's so fun to get all four generations together and share stories about how life is so different from when my grandma was a child and when she had her kids.  I especially like the story about how ice cream was a special treat for her family, she would cut a half gallon into 6 small pieces for each of them.

Eden met my grandma and knew that she was loved deeply by her.  We felt it was so important to get photos of us together before Eden and I left for Texas.  Now I realize how special these photos will be forever.     
We love you grandma!!

Milestones

September30th was 18 months since we lost our sweet Eden. We love her and miss her more than ever. After talking with other families who are also grieving the loss of their children we find that we really are dealing with it in our own unique way. I do not feel bitterness. I have a strong desire to live my life with Eden’s legacy in mind and to share our story with everyone. I want to do something wonderful with her memory, hence the creation of Eden’s Garden. I am sad a lot but at the same time grateful to God for giving me almost 8 months to hold, kiss, cuddle, touch and talk to my sweet Eden. I want her back more than anything in the world but I want to be a healthy mom for Reagan. Part of being healthy is doing what’s best for Reagan, what’s best for Scott and what’s best for me. This means spending time growing my faith, being with Reagan as much as possible and focusing on events that build us up rather than cause strain or stress. Another part of being healthy for me is something that I posted about a few months ago; it’s continuing to take my medication for depression and PTSD. Some people may wonder if this is in fact healthy, but for me it is. I need to do it and it helps me deal with my grief in a positive way.

We are having so much fun watching Reagan grow and develop. She is truly amazing. Not a day goes by when I don’t look at her and think about how far she’s come and how incredible she is. God is so good to us and to Reagan. We are a true testament of faith. Everything with Reagan’s medical issues and development were out of our hands. We cried and were terrified for the future. There were endless times when we were so discouraged and exhausted. But we kept strong in our faith, continued to pray and now you wouldn’t know that Reagan was any different than any other 2 year old. She’s in to everything!! She is so curious and brave. She talks back and says NO often. She eats everything!!!!! She never stops unless she’s sleeping. She is happy most of the time and constantly is laughing.

Another Eden's Garden event!

On Sunday we hosted another event for Eden's Garden!! It was amazing! We served brunch at the Ronald McDonald House in Children's Hospital Minneapolis. Our friends and family jumped in and helped us flip pancakes and cook sausages for over 50 people. Scott and I had a great opportunity to sit and talk with families and provide them with encouragement and friendship. Having been in their shoes it was easy to relate and have an open ear to listen. It was also so great to catch up with our friends and to talk about our kiddo's, especially Eden. Eden's Garden is right on it's way to providing resources and support to families going through the journey of being in the NICU. This winter we will be focusing on other activities to share Eden's story and we feel so proud of being able to do something to honor her life. A very special thank you to our wonderful friends and family for helping with this event, we LOVE all of you

Our first family vacation

We took our first family vacation the first week in August. This is something that we are thrilled to be able to do as a family. We went to the north shore and stayed in two different places. Our week consisted of biking, hiking, running, exploring on the shore and spending time together. We took some beautiful pictures and had a great time. Reagan did well despite waking up at 5:30 am the first day- we told her that we were on vacation and she needed to sleep in! Hard to tell a two year old that. Everywhere we went we noticed a butterfly near us- it was Eden!

Gordy's Hi Hat

Smores!

Gooseberry Falls

Splitrock Lighthouse

Doing yoga with mama!

2nd Birthday Party

Birthdays are a big, big deal for us! We are those people that plan months in advance, put lots of time an effort into organizing, invite everyone we know and maybe go a little overboard. But guess what I’m not apologizing for any of it. We have an amazing miracle and we love to celebrate her life! Reagan and Eden were gifts from God and during the seven months that they were inpatient we didn’t know if we’d ever get to birthday number two. For Eden we didn’t but we are grateful for the almost eight beautiful months that God gave us with her. For Reagan’s 2nd golden birthday we created a Very Hungry Caterpillar theme based on the book by Eric Carle. Scott and I had a lot of fun staying up late working on decorations and drinking wine.
We are so thankful for all of our friends and family who helped us celebrate this special day. This year was even more special because Reagan was eating!! She eats 100% by mouth now and ate her whole cupcake!! Last year she would barely touch her cake so to fast forward only one year is major progress. Sometimes we still can’t believe that she’s eating.

Eating

The day has finally coming, the day we waited for, worried about, prayed about, stressed over- Reagan is eating 100% by mouth!! We have not used her feeding tube in about one month. Something happened in June where she just flipped a switch and decided that she likes eating by mouth. We struggled for a month with giving her oral meals and then filling her belly with homemade blended formula but she just seemed like she was Thanksgiving Day full at every meal. We had a feeding therapist who helped us get Reagan from gagging with even one bite to eating everything in sight! She is excellent and we feel very indebted to her. If you want her name/information email me. So even though she is eating by mouth she really isn't gaining any weight. Our pulmonologist and pediatrician both tell us not to worry that these kids with BPD (bronchopulmonary dysplasia) are just small- always. We should never have to worry about her being overweight. And genetics also tell us that she should be thin. But oh my is she tall- she's in the 50% for height and pretty much taller than all the other 2 year olds we know!
Reagan has three favorite things right now- bikes, puppies (babas) and swimming! The Tour De France was two weeks of pure joy and amazement for her, she LOVES riding in the chariot and every time we go in the garage she says bike mamma, bike dada and points to her head for helmet (good girl) and eyes for sunglasses! She is fearless when it comes to dogs and will walk up to any size or shape for a hug and kiss. She waves at all dogs she sees and gets super excited and says baba when she sees them. I have to give Scott credit for getting her to love swimming- he constantly has her in her kiddie pool, then he upgraded to a bigger pool and just recently he bought a used larger 3 foot pool with a pump. I'm pretty sure Scott is setting her up for the Olympics!

Busy summer

Wow we have had a busy summer thus far. Here’s our overview:
June 12th: We received free Twins tickets and took Reagan to her first Twins game!! She had so much fun and was so cute sitting so nicely with us at Target Field. She also had fun eating the stadium food including a brat!

June 14th: Reagan participated in her first bike race!!! The Nature Valley Grand Prix bike race was in Minneapolis and we entered her in the kids “race”. She loves bikes so every other word was BIKE. She was by far the youngest and littlest racer and she got lots of attention. We had friends cheering for her during the event and I truly think she liked all the attention. At one point she stopped and looked at the crowd and gave a little smirk. It’s amazing to think that she’s now just like every other toddler; we truly had a hard time seeing this in our future when she was so sick, on O2, multiple meds and 100% tube-fed. Our faith has kept us strong during this journey.

June 17th: A not so happy father’s day. Scott was so excited to spend the day biking on the Cannon Valley bike trail for Father’s day but it ended in the urgent care. Scott caught some loose gravel and crashed his bike resulting in a slight concussion, road rash and a huge bump on his cheek. Reagan wasn’t phased in the least bit, thank God for that but Scott spent a few days recovering.
June 23rd: This is the second year we participated in the HeartBeat 5000 with a very special family who lost their son from a heart defect. We had an amazing day honoring him and saw lots of friends.

June 27th: I have such a mix of emotions when it comes to writing about special events that we participate in for Eden. On one hand I am so happy that we can honor her short life in such a special, meaningful way but on the other hand I’m so sad because I don’t want to have to honor her life this way. LifeSource which is the local organ procurement/donation organization has included us in donor celebration activities so we were invited to attend the Donor Family Celebration on June 27th. There was a beautiful ceremony with stories from a donor family member and from a donor recipient followed by a heartfelt message from Mark Ritchie and a presentation of medals of honor for each family by Mark Dayton. We loved having Reagan there to honor her sister and to receive the medal but again our hearts ached as we thought about our life without Eden.
June 30th/July 4th: Reagan was able to watch both mom and dad compete in events. Scott completed an Olympic distance triathlon and I did a 5 mile HOT run on July 4th. She is so cute and she’s our best cheerleader!!! She even got a high five from Dad before the finish line at his triathlon.