A new Christmas tradition

If you don't like crafts it might be best to stop reading now. I don't normally do stuff like this, but it might be kind of fun for others to read. We decided to make homemade Christmas ornaments every year- one for Reagan and one for Eden. It's a way that we can keep Eden present in our holidays and even better- in 18 years Reagan will have 36 ornaments to start her own Christmas tree!!


Step 1- don't let your baby eat wood!! We used round cuts of pine that my Dad found for us.


Step 2- if you're not creative whatsoever like me- get a glass of wine!!


Step 3- use a Sharpie paint pen to write the date on the wood.


Step 4- ask an adult (I asked Scott, he's actually more creative than I am!) to hot glue on the ribbon and Christmas decorations.


Step 5- we added R and E charms to each ornament to personlize them for the girls.

Our Christmas activities

We visited a germ free (or at least extra hand washing and hand sanitizer) Santa privately at Andover Floral. They are wonderful and will arrange private visits with Santa for medically fragile and special needs kiddo's. We really thought a Santa visit was out of the picture this year with sick kids at the mall, long lines, etc. So we are so grateful to Andover Floral for doing this, what a great service!!

Faith's Lodge Holiday Candle Lighting for Eden.

This is a special treat, the tractor is Scott's from when he was a kid. It's in excellent condition because its never been left outside. It's a little big for Reagan but it will be lots of fun.


Cookies and milk for Santa, we didn't get to do this last year in the NICU with the girls.




Two of Reagan's favorite things collide- chairs and tupperware. She likes to push them everywhere but this time she got stuck while trying to reach for her tupperware.

The weeks leading up to Christmas were hard, anticipating not having Eden with us created a strong ache in our hearts. We made it through by talking about her and sharing beautiful memories. We talked about how strong she was and how impactful her short life was. We love her more than the world and continue to keep her in our life. Reagan had a fun Christmas- she loves spending time at home with both of us. We play all day and she gets to nap with us- lucky for her and us! Here are a few photos from our weekend. Merry Christmas!!

Our first event for Eden's Garden!

Merry Christmas! I'm a little behind on posts, so I am trying to catch up. Last weekend we participated in our first event for Eden's Garden!! It was amazing! We served dinner at the Ronald McDonald House in Children's Hospital. We asked a group of friends who either have medically fragile children, have had a loss of a child or were a great source of support for us during the girls hospitalization. Our friends jumped in and helped without complaint and we were able to serve over 80 people. One great part about the night was being able to sit with families and talk about their kiddo's. 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. There's more to come on Eden's Garden as we get it established but for now we're just so proud of being able to do something to honor her life.

A very special thank you to our wonderful friends for helping with this event, we LOVE all of you.

Candle lighting

The weekend of Dec 11th we participated in the Compassionate Friends Worldwide Candle Lighting. The candle lighting is in memory of all children who have died, but our candle lighting was specifically for Eden. It spanned across hundreds of miles as we asked our family to light a candle for Eden at the same time for an hour. It was so special to see text messages coming in with beautiful pictures of candles for our sweet baby. We will continue to honor Eden's life in special ways to keep her legacy close to our hearts. As we approach Christmas, our hearts are heavy. The emptiness that she left in my heart is so huge and it cannot be filled. I wish she was here to celebrate this special season with us.

This past weekend we also attended the second annual Faith's Lodge holiday candle lighting ceremony. It was filled with music, poems, personal stories and connecting with our children. We took Reagan and she babbled, smiled and growled the entire time. She was so good, but definitely acting like a 16 month old baby. One dad said it best to Scott that despite the formal program, the sounds of kiddo's voices are so magical and welcomed. Even though some kiddo's were noisy and restless, this crowd was probably the most understanding and not at all concerned about little voices interrupting the program. This group of individuals understands the pain, darkness and everyday suffering that we go through. It's nice to connect with this crowd and we're truly thankful for Faith's Lodge. As we lit the candle for Eden we could share whatever we felt moved to say and my message was probably the longest but I could've talked for an hour. I love to tell our story and share the amazing gift that we received when Eden and Reagan came into our life. We will continue to tell their story in hopes of being of some comfort and understanding to others going through this type of experience.

Busy but we're still here

OK we screwed up, if you look at one of the blogs in Nov, we had a picture with her 16 month sign.... she was 15 months. So this is the REAL 16 month photo!



We've been so busy lately so not much time to blog. But we have lots of fun things to report. We LOVE having Reagan off of O2! It's still unbelievable to me sometimes when I look at her with no O2 tube on her face, she is truly amazing. We have been told a few times now that when the girls were little and still struggling a lot the MD's thought Reagan was the sicker baby and might not have a good outcome. Eden was so content on her ventilator and was doing well a lot of the time that they didn't worry about her as much until she was much sicker. Reagan surprised the MD's then and she continues to surprise us now. The words "you can take her off O2" was something we weren't expected to hear until she was 24 months old! She's doing great, she is SO fast crawling everywhere. She puts everything that's not nailed down in her mouth. Her hair continues to grow!! We also had a running joke that the girls were winning the hair growing contest in the NICU and Reagan continues that title even now. Wow can this girl grow hair!! She climbs the stairs at a blazing pace and will do it on her own if we're not watching her closely.

We saw a new GI MD at the U of M about her continued vomiting. She was great and spent lots of time listening to our concerns. We started a new Rx this week and are praying and hoping it will alleviate her vomiting. Any women who have been pregnant might be familiar with the miracle drug Zofran- this is what's she's on. We also met with her dietitian and we really need to increase her calories as she really hasn't gained weight for about one month. We are also going to transition to a blenderized diet, which will include "normal" people food blenderized with formula. This will also hopefully help her to want to eat by mouth. Please continue to pray for Reagan to embrace eating and learn to enjoy it.

Scott gave me an early Christmas gift- a trip to visit my sisters in Wyoming! We had a great time, we went snowshoeing twice in the mountains. It was beautiful, peaceful and a great workout. We treated ourselves to a great Vietnamese pho restaurant, wine, Christmas cookies, wine and more wine!! I enjoyed my time so much and was so grateful to Scott for giving me a break. Meanwhile Scott and Reagan enjoyed lots of quality play time together. Despite my resistance, Scott also took her to Mall of America. Her first visit to a mall and luckily he took her during the day when it was quiet. She actually thoroughly enjoyed herself, looking around at all the colors and making lots of noises.

The house is decorated for Christmas and we listen to Christmas music everyday, but I find myself having very, very sad moments lately. I think about our last Christmas spent in the NICU decorating the girls rooms, and how hopeful we were for this Christmas with both of our girls at home celebrating this favorite season. My heart aches when I think about the void that Eden left and how much I wish she was here to celebrate Christmas with us. This will be a difficult holiday....

Holidays

Scott and I have been having some anxiety and overall sadness associated with the holidays this year. We usually love Thanksgiving and even more we love Christmas, but it's incredibly painful to think that we are missing our sweet Eden for both of these special times. I "allowed" myself to enjoy Thanksgiving and I had such a great day. At 31 years of age I finally made my first turkey and it turned out great!! The rest of the food provided by our families was wonderful! I skyped with my sister and Reagan sat at the dinner table with us and even tried some sweet potatoes! All of these were highlights but even more wonderful was what we did for Eden. As you may have noticed we like to remember Eden in special ways and honor her life every holiday. Scott decorated Eden's tree with over 1,000 white, sparkling Christmas lights!! He did a beautiful job and we had a tree lighting ceremony for Eden. I talked to her and told her how thankful we were to have 8 months with her and how much we missed her everyday. We shed some tears for her and marveled in the beauty of her tree against the dark sky. Reagan loved it and stared at it the entire time.

The emotional roller coaster continued as we took Reagan to pick out a Christmas tree, wishing that Eden was there with us. We chose a lovely tree and spent Saturday night decorating, listening to Christmas music and keeping Reagan away from ornaments. Mom's and Dad's of 15 month olds- Any advice on this?? I may not be Suzie Homemaker but I think my 2 Christmas trees look pretty good.

Finally, I have a very long list of things to be thankful for this year but I will slim it down to my most important.
*My beautiful, healthy baby Reagan.
*Being able to spend 8 months with my beautiful baby Eden.
*My amazing husband who supports me during my darkest days and comforts me when the tears won't stop.
*My faith in God.
*My family.
*My well-behaved, loving dog Lilly.
*My amazing church, Eagle Brook.
*Fantastic Healthcare- specifically Children's Hospitals and Clinics of MN.
*A perfect job that I'm passionate about.
*Heat Yoga in Blaine.
*Ben & Jerry's ice cream!

In case you were wondering, yes God does answer prayers

I have learned how to scream!!


Reagan is off oxygen!!! We are thrilled. We saw her pulmonologist last week and he suggested doing a trial overnight off O2. I, of course was worried but we decided to do it Saturday night. Saturday nights change when you become a parent. No more going out, dinners or parties. Instead its playing, reading books, rocking your baby and off to bed early. Scott and I took shifts watching her all night to monitor her sats and she did fantastic. So no more getting tangled in O2 tubing or pulling her cannula out of her nose. Just a beautiful face for mom and dad to kiss all over!!! We have prayed for this time to come and we thoroughly anticipated that it wouldn't be until she was 24 months old! Thank you God for your power and grace!!