Eden's Tree

Today we planted a tree for Eden. Scott and I spent countless hours picking out the perfect one. We finally decided on a large Adam's Crabapple, it flowers with tiny pink blossoms. How appropriate for Eden. We know that she is looking down from heaven admiring her pretty tree. We bought the tree with a gift from her "nursing family", the RN's at Children's. We hope they will all want to come over to see it... hint hint. In addition to Eden's tree, we have a landscaping project happening. We are very excited to have it finished, but we'll have to figure out how to get Reagan down to the new patio area. We've been taking her out on the deck to get some fresh air and she loves the breeze in her face. We're almost ready to venture out on a walk, but we are still worried about exposure to sick people.

Reagan has had some trouble this week with vomiting. We are still trying to get it under control, but it seems that she's not as uncomfortable when it does happen. She's also teething again, which causes her a lot of pain. She is doing so much from a developmental standpoint and we love it. It makes us smile to hear her babbling, talking, balancing on her hands and knees, and laughing. The funniest part of our day comes when we watch her sleeping on the baby monitor. She moves constantly and usually ends up with her head at the opposite end of her crib tangled in her tubes. It's so funny and we wonder how she gets any sleep. Sleeping is definitely her strong suit- she sleeps between 10-12 hours a night while only waking up once or twice!




I haven't said this in awhile, but thank you to everyone for following our blog and reading our story. We feel so supported and blessed to have so many people in our lives who care deeply about us. We usually ask for prayers, but today I will ask again for each of you to please consider organ donation. I have mentioned previously that we have become friends with quite a few families of children who are medically fragile. These parents have so much strength and courage, but those who are waiting for a life-saving organ for there child is particularly stressful. So please pray for baby R tonight as she is waiting for a new heart. Thank you.

It's not fair....but we have teeth

Lilly, you make a comfortable pillow!


Baby in a box!


Look at my teeth everyone!


Lilly is so tolerant, what a good doggie.

Today was one of those 'it's not fair' days. It's not fair that Eden is gone. It's not fair that Reagan is still fragile. It's not fair that we have medical equipment to deal with. It's not fair that she can't be out in public. It's not fair..... Sure this may sound like a pity party, but really its just not fair. We don't know why we were chosen to go through this, why Reagan has to go through this. I pray everyday for an answer to these whys.

What precipitated all of these feelings was that Scott and I went to the farmer's market this morning, one of our favorite Saturday morning activities. One of the activities that we talked about endlessly and envisioned doing with the girls. Seeing babies in strollers, with bottles, rain boots and no tubes made us sad. We were sad that Eden and Reagan can't be with us in their stroller without tubes. We just don't get the same amount of joy from this anymore, and we're not sure that we ever will again.

Reagan has had some ups and down's this week. She has been vomiting more lately, so we made some adjustments to one of her Rx's. We're praying this works because we hate to see her uncomfortable and screaming in pain. She also hasn't been sleeping as well and we're used to, sometimes waking up screaming. It's either gas pain or teeth pain. On a good note, she did get two teeth! My baby has teeth! Kind of makes me sad... I can't believe she's growing up so fast! She now weighs 15 lbs, 10 oz/7.1 kg. She is also balancing on her hands and knees and getting into the crawling position. We love watching her take developmental steps forward!

Please continue to pray for us, we definitely have bad days like today and we feel so much heartache as we grieve for Eden.

Faith's Lodge

This weekend we went to Faith's Lodge in Danbury, WI. http://www.faithslodge.org/ This weekend was for bereaved parents. We met some wonderful couples, unfortunately we were all brought together by a horrible event in our lives- losing our babies. Scott and I were extremely nervous to leave Reagan and checked in a lot. She did well with Scott's sister, my parents and our RN's. We took some time to focus on our grieving process, we talked a lot about Eden, remembered the special things about her and cried whenever we felt like it. We miss Eden so much and wish everyday that she was here with us. We continue to ask God why, but we are trying very hard to have faith in Him. I won't lie, our faith has wavered and its hard but we keep coming back to the fact that God loves us, He's in control and He gave us 8 amazing months with Eden.

Mother's Day 2011

After an amazing, surprise breakfast made by my wonderful husband we released a pink balloon for Eden.



I snuck up on Reagan while she was supposed to be napping.

My Mother's Day was wonderful yet bitterweet. I miss Eden so much, my heart just aches. But Scott made it very special. I received two gifts that made me smile today. The first, as you can see below I received a beautiful letter from Eden. And second, Reagan was holding my card smiling when I went into her room for our surprise family breakfast. Thank you Scott for this special surprise. Thank you God that Reagan is here with us and doing well.

Mother's Day Letter from Eden

Mama,

Every day I am up here in heaven with Jesus, I am looking down on you. I miss you so much! I miss how happy you were everyday to see me. All of the nurses thought I was interested in seeing everyone walk by, I was looking out the door super excited to see my Mama come to hold me, read to me, talk to me, tell me stories, and kiss me. Even when I was resting, I could hear you and knew you were there with me. I would sleep so well knowing that my Mama was with me. I know you and daddy were talking about who should go with me on my first plane ride, I was really glad you guys decided it was you. I miss daddy also but you are the best Mommy that anyone could have ever asked for. You did everything possible for me. You took care of me from the very first day I had a heart beat, you put everything in your life on hold to make sure that Reagan and I would be as healthy as we can.

I up here in heaven playing with all of my toys, I even have a REAL Charlie here and ride him and kick my legs and laugh, he is awesome. I can’t wait for you to meet him. I am sitting up just like my sister and playing but I don’t have any tubes or machines connected to me. I am trying to roll over and want to crawl so that I can beat my sister but for right now we are doing the same things. I love to eat sweet potatoes, carrots but I really like pears and squash, you should give those to Reagan, I am sure she will love them as much as I do.

I want you to know that I am up here healthy and happy; those were the best eight months I could have ever imagined feeling all of the love I got from you and daddy. When you look at Reagan just remember I am doing the exact same thing as her but up in heaven. I want you to be happy again because I am happy and feel so lucky to have spent the time I did with you.

I am so excited to see the tree that you and dad are getting for me. I will make sure to take care it so you can watch it grow but to be big and strong just like me. I can’t wait to see you again. I am going to run up and give you a huge hug and kiss because I miss you so much. I LOVE YOU MAMA!!!!!

Happy Mother’s Day!

Love,
Eden

Surgery

Yesterday Reagan had surgery to remove her PEG g-tube and have it replaced with a easier to use Mic-Key button g-tube. It is like a small valve button that can be opened and closed, it's attached with a balloon inside and will be replaced every 3 months. She also had an echocardiogram and chest x-ray done while she was in recovery and also 6 month immunizations. She started out the day mad because we had to wake her at 5:30am to get to the hospital on time. She wasn't at all happy about being taken away from her Mom and Dad and then when she came back from recovery we could hear her whining while she was being wheeled down the hall.

Her surgery went well with no complications, she had to be intubated so her throat was very sore and hoarse. Poor baby. Her cry was very hoarse for the evening. I think the impact from the immunizations was even worse though. She literally whined all night long, its like she couldn't get comfortable. We gave her plenty of Tylenol but poor baby just couldn't sleep well. Her echo was normal and showed no signs of Pulmonary Hypertension.... my heart aches just typing this word. I'm terrified of it and really hate to have it even come up in conversation. We met with her Pulmonologist who said her breathing seems much improved, but he also said that we still have to monitor her regularly for PH. Again this is terrifying, we really thought we were out of the woods but it turns out that she is still at risk for PH. We forget just how fragile she still is, she has chronic lung disease and this isn't something that just goes away. It takes LOTS of time to grow new, strong lung tissue. So we continue to pray that her lung function improves. For now she is on O2 and this is our life. We have accepted her tubes and know that this is what is best for her. We will do whatever it takes to keep her healthy and strong. Please pray that Reagan continues to grow healthy, strong lung and she stays healthy.

Yesterday was difficult for Scott and I as well, we were asked how Eden was doing by someone who didn't know.... For me, the hospital is hard to go to because I think she's still there. The memories are so strong, Children's Hospital was Eden's home for almost 8 months therefore it is always in our hearts.

Finally, I was reading a book about grief that discussed the stages of grief. Shock is one of the first, and it mentioned that if you think you can talk to the person or simply go see them and you can't believe that they're gone then you're in shock. I still feel this way, like I said I think we can just drive to south Minneapolis, park, get our nametag from C or D, take the elevator to 3rd floor, into the NICU and down the hall to her room where she'll immediately smile at us because she knows her Mom and Dad. It doesn't seem like I CAN'T do that. But the heartache is so strong when I realize that this is reality and I will never again see her. I miss Eden more than anything in the world. Losing my baby is the worst pain I have ever experienced. I love you so much Eden.

9 month birthday

Today is Reagan's 9 month birthday and Eden's 9 month heavenly birthday (6 months adjusted age)! We are so sad that we cannot see the girls together... our hearts ache to see Reagan making such great progress and know that Eden could also be doing the same things. We feel like we lost Eden just yesterday and I suppose that's good because then she's so close to us its like we can feel her presence. I am slowly making trips out of the house, which makes me anxious to be away from Reagan, but it seems to help a little.
Here's a little overview of what Reagan has been up to on this day her 9 month birthday.
Weight: 14 lbs, 11 oz
Length: 25.5 inches
Hair: Growing like crazy! Resembling a fuzzy blonde puppet.
New activities: Started sitting on her own this week! Putting toys in a basket, laughing, blowing bubbles, holding her arms underneath her for short periods of time, eating vegetables in small amounts, scooting on her back to make herself move!
Health: Her O2 was weaned down one-half liter, and breathing is good.

We miss our sweet baby Eden every second of everyday and we think about her constantly. We pray that her legacy will always live on.

We love you Eden.