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.

What to do about tantrums?

On Saturday June 2nd we were joined by 20 friends and family at the Baby Steps 3K hosted by and benefiting Children's Hospitals and Clinics of Minnesota.  We were so happy to be apart of an event like this to raise money for a great organization but more importantly we were able to have a special day to remember our sweet Eden and find joy in the amazing progress that Reagan has made.  This reunion of our NICU family was so much fun and we were so excited to show off Reagan to the nurses, doctors and staff from the NICU.  These people mean so much to us, they were truly a family for us and they saw Reagan and Eden at their worst when they were sick and struggling to breathe.  They traveled along the journey with us hoping and praying that our girls would turn out healthy and happy.  They were overjoyed to see how far Reagan has come and we were so proud to point out that Reagan is almost caught up developmentally and hasn't been sick since she's been home!  We could barely walk 5 steps in the party area without stopping to talk to everyone we knew and Reagan was such a ham all day!  God has given us an amazing gift and though we don't have Eden to hold in our arms we know that good things will happen and are happening with her short life.  Eden was with us on Saturday, I could feel her presence and delight in remembering her beautiful face.  God gives us these special moments in life so that we can feel happiness and for those I am tremendously grateful.  A HUGE thank you to all of our friends and family who walked with us on Saturday and a special thank you to all those who donated to such a great organization.  Thank you, we love all of you!

Now on to the title of this blog... Reagan has just started to throw temper tantrums.  It is mostly when she's tired but she turns into an uncontrollable little thing.  On Sunday night after our crazy busy weekend she had an EPIC meltdown/tantrum- worse than we've ever seen before.  As first time parents we have taken the stance of stand back and watch, but I'm wondering if there's anything else we can do.  Any advice or ideas are appreciated :)

Baby Steps 3K

I posted a few days ago regarding a very special walk that we’ll be doing to benefit Children’s Hospitals and Clinics of Minnesota NICU, the Baby Steps 3K. We are thrilled to be part of this event and can't wait to see our NICU friends, doctors, nurses and staff. These people became our family and we have a very special place in our hearts for them. We will all be wearing our beautifully designed t-shirts for Eden’s Garden- see photo below. Even though you may not be walking you can still purchase a t-shirt!! All proceeds will benefit Eden’s Garden. The t-shirts may be purchased for $12 each (and an additional $3 for shipping if you are not picking it up from us) and come in a variety of sizes including kiddos. Please see our facebook page at http://www.facebook.com/edensgardenmn or email us at edensgardenmn@hotmail.com to order your t-shirt. You can use Paypal.com via edensgardenmn@hotmail.com . Thank you for your “virtual” support. We feel so blessed to have such an amazing community of blog friends. Love, Amanda, Scott, Reagan and always in our hearts, Eden

Hamburgers and brats!

It's not very often that you read a blog post titled hamburgers and brats... who cares right? We do! Reagan ate hamburgers and brats this weekend with us!! And let me tell you it was exciting! Most parents feed their kids hamburgers and brats over Memorial weekend and think nothing of it but for us this is major. We gave Reagan little pieces of both and she ate them!! She is making great progress with her eating and we are so excited! We were also in Stillwater this weekend biking and wow that was a lot of work, mostly for Scott because he pulled Reagan in the chariot up those brutal hills. But we rewarded ourselves and Reagan with a treat from Cherry Berry and she LOVED that too. We saw Dr S who was Eden's ENT MD for a consult regarding a teeny tiny bump on Reagan's neck. Dr S didn't know that Eden has passed away and he asked about the details, it was much harder to talk about it then I expected. We were originally told that the bump would have to be surgically removed in the OR.... something that we were not thrilled about. We were pleased to hear that Dr S says he's in no hurry to remove it at all and we can wait at least 9 months to do anything. She also will not have to be intubated but rather have minimal anesthesia. This weekend we are thankful for all the men and women who have and are currently serving in our military. Thank you for your service.

Giving Lilly kisses.

Summer

Reagan is a busy girl. She's into everything and doesn't sit still. We have so much fun playing and cuddling. She is stuck at 21 lbs, but getting taller everyday! Next weekend we will be walking in the Baby Steps 3K with all proceeds going to Children's Hospitals and Clinics of Minnesota NICU. We are thrilled to be part of this event and can't wait to see our NICU friends, doctors, nurses and staff. These people became our family and we have a very special place in our hearts for them. If you want to see our team page- Eden's Garden, go to http://babysteps.childrensmn.org/. We've also been busy trying to get Eden's Garden foundation started. We plan to help families who are on the journey in the NICU in whatever way we can. Since we're in the beginning stages we don't have too much to show, but we do have a facebook page! http://www.facebook.com/#!/edensgardenmn . Soon we'll have our t-shirts for purchase!!

Running

Everytime I look at Reagan all I can do is smile. She gives me such joy. Even when I'm feeling so incredibly sad, I look at her beautiful face and see her smile and my heart is filled with love. It's amazing how much life changes when you become a mom. I would do anything for my babies. I did everything in my power to save our sweet Eden. At one point while in TX I asked the transplant MD's if they could use a lobe of my lung for Eden. Mother's Day was bittersweet. I'm so blessed to be a mom but in the same breath I'm so sad. Sad that I don't have half of my heart, sad that I can't look at Eden's beautiful face and see her smile too. I will always have saddness in my life, especially on days like Mother's Day. But I have to make a choice to be happy and to allow my heart to be filled with love from Reagan. Some days its harder than others, but I know I have to be happy for Reagan, Scott and Eden. Eden is happy, she wants me to be happy. Reagan is one busy little girl. She is 21 lbs and 32 inches tall! Tall and skinny! She runs everywhere! We play outside everyday and Scott takes her for bike rides almost everyday. They biked over 50 miles this week and she LOVES it. One of our best investments was our chariot. She is trying to expand her vocabulary but ultimately her default word is baba- baba was originally only used for puppies but now she says it when she doesn't know a word. Eating by mouth is going much better, she has made tremendous progress! She will try everything we put in front of her and she's not at all picky. She still has some trouble figuring out how to chew and swallow all textures and sizes but she's getting there. We are so incredibly proud of her. We are very close to officially rolling out our foundation, Eden's Garden. We are doing another event on June 2nd at the Minnesota State Fairgrounds called the Baby Steps 3K which will benefit Children's Hospitals and Clinics of Minnesota NICU. We are thrilled to be apart of this event, we will be walking in memory of Eden and in honor of Reagan. I even have a special role of reading a story to the children. There's still time if you would like to join our team, Eden's Garden- we would love for you to walk with us!! Our t-shirts are beautiful and we will be rolling them out on Facebook tomorrow.