Christmas Eve Morning

On Christmas Eve, Ryan and I went to the hospital to drop off the donations we received throughout December. It was such a wonderful way to start off our holiday, remembering our little girl.  We got to see the nurses and staff that became our friends during our 83 day stay.  It felt like coming home.... to Ella's home. 

The donations we received brought tears to my eyes.  It was unbelievable!  We had people from all aspects of our life support us and were so willing to give.  We had co-worker friends, friends from college, friends from home, friends from support groups, friends of friends,  friends of family,  friends of the NICU and some friends we didn't even know drop off money, blankets, books and toys.  Our house was filled with donations that were given all with love from so many friends.  So many generous people with big hearts gave so much to our cause. We are forever grateful for the support.

We collected over 125 blankets, 95 books, 25 toys, and 40 clothing items.  Ryan and I couldn't stop smiling as we wheeled the cart in with all of the donations.  Our friends at the NICU were excited to see us and were so grateful. There are no words to describe the feelings of giving back, seeing old friends and knowing that your baby is smiling down on you.

 

An ornament I saw during the holiday said  “Perhaps they are not stars in the sky, but rather openings where our loved ones shine down to let us know they are happy.”  Our little star brought light to her friends in the NICU on a snowy Christmas Eve morning. We know our donations helped bring joy to many babies and families in the NICU over the holiday season and we know that our little girl is so happy because of that.

Now as the New Year approaches we are back at getting new events for Ella's Halo started.  Big ideas, fun events and more love is in store for 2010!  It is amazing to think that all of this is because of a sweet little angel.

Snow Angels

On Christmas morning, Ryan and I went out to visit our little girl.  We made snow angels together as a family...Ryan and I making the angels and Ella making the snow.  It was a beautiful morning, snow flakes falling down around us as the snow was glistening in peaceful silence. 

This is not how we thought we were going to be spending our Christmas a year ago, but now I can't think of any other way than making snow angels with our little angel.

Warmest Wishes

2009 brought us a huge blessing, our daughter Ella.  And during this holiday season, we ask that you please remember her.  Though her time here was short her memory lives on through our non-profit organization, Ella's Halo. 

Ryan and I would like to thank all of our friends and family who have been following our journey this year.  We are so very blessed.  We hope that the New Year brings your family many blessings in 2010.

Happy Holidays from Ella's Halo, the Krumwiedes, and our little Angel!

photo from http://www.shutterfly.com/

The Gift of Giving

As we approach the holidays, Ryan and I start to think of how we can give back and help others. This year we are fortunate to have something so near and dear to our hearts, Ella’s Halo, in which we are giving back to our friends at the NICU.

Our second board meeting was held this week and we discussed the various options of giving. One board member had a holiday party with friends and had them bring blankets which they donated to Ella’s Halo and another board member bought bereavement clothing which will be donated to the NICU in Ella’s memory. And my company is just now finishing up its donation drive for Ella’s Halo. It is amazing the support we are getting from friends and family and the donations that are coming in through the door.

This holiday is going to be very difficult for us, however on December 24th Ryan and I have something very special to look forward to. We are going to the NICU on Christmas Eve morning and dropping off our donations to the unit. It will be a wonderful way to remember our little girl.

Just remember that the act of giving never fails to bring rewards. It is a true gift and is evidence that we feel blessed enough to be able to help others. Giving isn’t always about money or items, it can be donating one’s time and talents to a cause you believe in. Give to your family, give to friends, give to others in need, but always remember to give love! It is the season of giving.

No Words

Over this past week, Ryan and I spent time at Faith's Lodge.  There are just no words to describe our experience, how beautiful the building and grounds are, and the wonderful friends we made. 

We were able to spend the last few days only as Ella's parents, talking about her short life, talking about the hard process of grief, talking about how our lives forever changed.  We learned about other's stories, listened to their challenges, listened to how they found strength and listening to how their sweet babies changed them forever too.  There are just no words to describe how comforting it is to be with others who understand and to form lasting friendships.

Faith's Lodge is a beautiful building out in the woods of Wisconsin.  There are huge fireplaces that make for cozy and warm areas to sit with others to talk, laugh and cry.  There are beautiful hiking trails that have inspirational quotes, a little bridge of hope with heart stones and names of other babies and provides a peaceful walk to be together as a family. It is amazing that there are places for bereaved parents to go to share stories, remember the love of their child and the hope that they brought.  There are no words to describe how thankful we are to have been able to have the opportunity to stay at Faith's.

We got to spend time with others but we also got to enjoy some time together.  Ryan and I did craft projects, went for walks, sat by the fireplace playing cards, read books, and roasted marshmallows by a bonfire.  We were together as a family and remembering our little girl. We talked about what the future now holds for us, where we want Ella's Halo to go, and how lucky we were to have 83 days.  There are just no words to describe how special it was to spend time together.

For five days we were nothing but Ella's parents.  We had five days to sit and think about her, talk about her, cry about her, laugh about her, love her, remember her, and miss her.  There are just no words to describe how wonderful that was.

Check out http://www.faithslodge.org/.

Angel of Hope Park

We had such an amazing night.  The sky was filled with twinkling little stars, the air was crisp and brisk and there was a glow of candles.  It was simply beautiful.  We were surrounded by our family and others who know the pain of losing a child.  It brought us comfort and peace. 

The park was filled with so many people who have lost children.  It is a bond that you never want to share with others but when you find out you do, friendships form.  It gives you comfort to be around others who know pain, sadness, anger, and the hole that is always in your heart.  Usually nothing is said between parents who have lost a child, just a nod of pain and brief smile to show you understand. 

They had a speaker after the outdoor candle vigil at the Angel of Hope park at a nearby church.  He talked about how you must love the people that are still here with us, to hug them, and tell them that you love them. He talked about how grief never goes away but it simply becomes a part of who you are.  And that those Angels that we miss are always showing us signs that they are with us.  We just have to watch for them.  His message was special and touching to all bereaved parents.

I love the new tradition that Ryan and I started last night on December 6th.  We will be there next year holding our candles, holding our white flowers and still holding on to each other.

Angels and Faith

On December 6th, Ryan and I are going up to Perham to attend a candlelight ceremony at the Angel of Hope Park.  It is a beautiful park dedicated to honor children who left us too soon and it is a way to remember their lives.  There are memorial bricks that are placed around the base of the Angel of Hope statue with each of their names and a little message.  There are walkways that go in a circle around the angel with beautiful quotes about children. The statue and surrounding area is intended to be a place of peace and healing for all bereaved parents.

Next week, we will be going to Faith's Lodge in Wisconsin.  We are looking forward to spending time with other families who have lost their little babies too, learn from their experiences and share our own. Faith's Lodge is a retreat for parents to reflect on the past, find renewed strength and helps to build hope.  There are various activities, group discussions and ways to share and remember our little girl's story.  We are planning to stay for four days to fully take in everything that Faith's Lodge has to offer. Faith's Lodge provides a peaceful escape for families to refresh spirits while spending time with others who understand what they are experiencing ( http://faithslodge.org/).  I think this place is going to be really special for Ryan and I, especially now as the holidays are approaching.

And finally, we are getting things together for our next board meeting that is scheduled for December 15th.  We have many exciting things that are happening that we can't wait to share with the board members.  It is amazing the faith that we are feeling from people who believe that we can really help other babies and families.  There really are angels all around us.

Sunsets

I love sunsets. I look at them differently now than I did before Ella was here. I think it is her way of saying goodnight to us from Heaven. I believe sunsets show us a little glimpse of what Heaven is really like.

This past weekend we were out at the cemetery visiting our little girl before Thanksgiving dinner and the sky was lit with bright pink streaks. It was beautiful, awe inspiring, loving, glorious, and peaceful. What a wonderful way for our little girl to tell us goodnight by showing us a beautiful sunset. She was secretly telling us that she missed us and that she can’t wait to meet us in Heaven someday. The sunset that night was showing us a little piece of Heaven here on earth…showing us what Ella is seeing up in Heaven.

Thanks & Giving

We have so much to be thankful for this year. 2009 has proved to be the hardest year and the best year all wrapped into one.

I am thankful for a husband who loves me and who loves his little peanut even more.

We are thankful for our parents who helped us get through a very sad part of our lives but also were by our sides through the happiest too.

We are thankful for our four brothers who all got to meet their little niece and finally become uncles.

We are thankful for our friends who support and love us even when we aren’t at our best.

We are thankful for 83 days and each day was a gift that we got to spend with our sweet little princess.

We are thankful to doctors who worked very hard at trying to make our baby girl better even if it was really out of their hands.

We are thankful to nurses who not only loved and cared for our precious baby but loved and cared for us.

We are thankful for prayers that surrounded our daughter and our family.

We are thankful for 3 women who sit on our nonprofit board who are compassionate and dedicated to our cause.

We are thankful for Ella’s Halo which is helping us to heal and to use our sadness to help others.

We are thankful for the support and donations that so many have already given us to help other babies.

We are thankful for finally becoming parents and fully understanding the love between a parent and a child.

We are thankful for being able to give back to the NICU; it has helped us to keep Ella’s memory alive and it is what she would have wanted us to do.

We are thankful for the friends we made while at the hospital, those doctors, nurses, and staff touched our lives in a way they will never know.

We are thankful to be able to meet others who are on the same journey as us; they provide us with hope, courage, strength and friendship.

And most of all, we are thankful to have met an angel before she got her wings and flew up to heaven.

Eyes Wide Open

Ella’s Halo is officially having its first donation drive. My company started this week collecting blankets. So far over 50 blankets have been collected! I can’t believe our ideas are starting to come together and we are starting to do what we have wanted to do for the last six months, we are finally starting to be able to give back to our friends in the NICU. I have to pinch myself to make sure what my eyes are seeing is really coming true.

We have also been receiving kind notes with little donations from our friends and family which brings tears to my eyes every time we get something in the mail or someone drops something off. With each donation you can feel the love from others and know that their support isn’t only for our cause but for me and Ryan too.

Our eyes have been opened to how lucky we are to have our friends and family support us and be behind us every step of the way.

Our eyes have been opened to how caring, compassionate and gracious people can be. We are deeply blessed and strengthened by others who are supporting our cause.

Our eyes  have been opened to how much you can love a person. The love we have for our sweet little girl Ella will always be in our hearts and hopefully it will spread to many others who have tiny little babies in the NICU too.

Two Little Blue Lines

A year ago today we found out we were pregnant. We had so many hopes and dreams about the family we were starting. What would we have? What would we name the baby? Where would the baby go to daycare? How would we finish the baby’s room? Everything seemed so great. We never expected to have a baby nearly 3 months early and spend an additional 3 months in the NICU, let alone not ever be able to bring our baby home. It’s the things you least expect that have the greatest impact on your life.

Spending all of Ella’s life in the hospital is definitely not what we had in mind a year ago. But Ella’s time there was our family time, and it has given us a reason to give back and help others who have this life-changing experience thrown at them. Believe me, when this happens to you, you are in a daze. You don’t know what is going on, and don’t know what to expect. We want to help make this intense, and extremely overbearing experience a little easier for babies and their families while they are in the NICU. I think Ella would like that.

It is amazing how two little blue lines can lead you down a completely different path than what you thought. How two little blue lines can really change your life forever.

Faith

I found this poem and think it fits us perfectly at this time in our journey. Ryan and I have faith that Ella’s Halo is the light after the storm. Our hearts are hurting but are now healing because of the wonderful support from others. We have faith that Ella’s Halo will carry us through.

FAITH

By Author Unknown

Faith isn't anything you can see;

it isn't anything you can touch.

But you can feel it in your heart.

Faith is what keeps you trying

when others would have given up.

It keeps you believing in

the goodness of others

and helps you find it.

Faith is trusting in a power

greater than yourself

and knowing that whatever happens,

this power will carry you through anything.

It is believing in yourself

and having courage

to stand up for what you believe in.

Faith is Peace in the midst of a storm,

Determination in the midst of adversity,

and safety in the midst of trouble.

For nothing can touch a soul

that is protected by faith.

Prematurity Awareness Month

November is Prematurity Awareness Month. Another cause that is dear to our heart since Ella was born at only 24 weeks old. There are over half of a million babies that are born too soon each year and just in Minnesota over 150 babies are born early each week and enter the NICU world (March of Dimes). Many of those babies stay for an extended time within the NICU.  We hope Ella's Halo will be able to bring comfort to these babies and families during their stay at the hospital while they struggle to grow.

A premature birth, which is before 37 completed weeks of pregnancy, is the most common cause of neonatal death. The earlier a baby is born, the more likely he or she will die either due to prematurity or other complications. When Ella was born at 24 weeks I remember the Doctor telling us that there was a 30% chance she wouldn't make it those first few days. Lucky for us she did survive for three more months, but ultimately it was complications from prematurity that took her life after 83 days. The longer a baby can stay in the womb, the higher the percentage is for that baby to survive.

It gives me hope to know that while premature death is still very common, medicine and techniques for these babies are improving and the survival rate gets much higher each year. March of Dimes fights to put an end to premature birth, the number one cause of infant mortality. And so during this month I hope that awareness is brought to everyone to see the impact that a premature birth has on babies, their families and NICUs.

 

Saints and Halo

November 1st was All Saints Day. Ryan’s hometown church did their service in memory of people who had passed away this year. Our little girl was one of the people who the service was in memory of. Ryan was out of town and we were unable to attend and make it up north but I thought about her all day on Sunday. Even though I was home by myself I really didn’t feel alone, I felt like someone was watching over me. My own little saint. What a wonderful way to remember loved ones and to honor those whom have left us too soon.

We also have a few exciting things that have been happening here for Ella’s Halo. We received our Employer Identification Number, that allowed us the ability to open a checking account. Ryan and I officially got a checking account set up. We are getting things together and are finally starting to feel like our nonprofit is established.

Another exciting thing that is coming up is that my company has decided to donate items to Ella’s Halo during this holiday season. We normally pick a charity to donate toys, food or money, but this year they have decided to help our nonprofit with our first event. We will be having a blanket drive, book drive and a pizza party with all contributions going to Ella’s Halo. How exciting is that!!

I have also been in contact with a few people from the hospital. We are going to meet with them to hopefully get some things started there too. They have already been sharing so many wonderful ideas with us and we can’t wait to get started working with them on a regular basis.

Finally, Ryan and I have been working on our 1023 form and business plan. It is slowly coming together and we are looking forward to getting it approved by our board and sent off to be filed. Our next board meeting is scheduled for December 15 and I can’t wait!

The support from others that we know and even some we don’t know has been so overwhelming and touching. Unless you have walked this road of losing your child, you may never know how painful it is, but at the same time you never get to see all of the goodness in the world. We are so lucky to be surrounded by so many supporters who believe in us. It has made our journey a little more hopeful!

Daddy's Little Girl

Ryan’s story about how our little girl came into this world probably differs than mine, actually I know it does. The poor guy had to take care of his bed ridden wife who needed him to do everything for her for 5 long weeks. And trust me, I wasn't easy to take care of. Then one scary night he was chasing behind an ambulance on the way to a hospital he was unfamiliar with, running down the halls to find out where his pregnant wife was rushed to. Once he got into the hospital room there were so many questions flying his way, and so many uncertainties about what was to happen. After our daughter was born, he was rushed into a waiting room while I was in surgery and Ella was moved down to the NICU for more care. After he named our daughter and made sure I was recovering from surgery, he finally got to realize what had just happened. He was now a daddy to a beautiful little girl.

What a daddy he was! He got so involved in the care of Ella, from what drugs they were giving her, what the machines did and googling what the best options were, to rubbing her head and changing her diapers. He even liked all the pink and the little bows for her hair. He was so strong, so loving, and so wonderful.

A few of my favorite moments with Ella have to do with Ryan too. The first time Ella really opened her eyes to look at us was the first time Ryan got to hold her. She opened her eyes and just gazed into his eyes. I did everything I could to get her to look at me but she would just glance in my direction and then look back at her daddy. It was as if she knew us so well already. That her daddy is the calm, laid back guy who would spoil her rotten and that I was the crazy high energy mom who would be always telling her what to do. Of course she wanted to bond with her daddy. She knew that he was already wrapped around her tiny finger.

Another memory that I have was during a long stretch of time we spent at the hospital. I don’t even remember how many hours or days we were there at this one given time. However, I was taking a little snooze in a chair next to her bedside and Ryan was sitting next to her. I remember waking up to Ryan’s voice. He was chatting away about the Twins, what we would do when she got to go home, and how much he wanted her to get better. I opened my eyes to see them holding hands. Ella was just laying there listening to him talk, no alarms were going off, and she wasn’t sleeping but just listening to what her daddy had to say. I am sure he was sitting by her talking for a good hour or so while I was sleeping and Ella was just so happy to be hanging out with her daddy. Ryan looked up at me and just gave me the biggest smile. It just melted my heart. I love these little moments, and these memories. I will cherish them forever. The two loves of my life bonding as father and daughter.

Now Ryan and I only have each other. Sometimes when I am crying, he doesn’t have to say anything, just hugs me and everything seems a little better. He holds my hand to let me know I am not alone. His blue eyes show the pain that I am feeling. But one thing I have learned from him through all of this is that my husband is determined. He was the driving force behind trying to figure out why Ella was so sick, and he is now the driving force behind Ella’s Halo. When others said we were only passionate about a nonprofit because we were still grieving…it was him who knew we could do it and wanted to keep pushing on because he truly believed in our cause. I am so happy our nonprofit has him as our Executive Director. He handles the daily tasks for Ella’s Halo, makes the contacts and connections, and works out the logistics of the ideas the Board comes up with. I couldn’t think of anyone else to be our Executive Director.

He is now even stronger, just as loving, and wonderfully determined.  I am so lucky to have Ryan as my love, my husband, our Executive Director and my little girl’s father. And Ella will always be her daddy's little girl.

Our Logo

We now have an official logo for Ella's Halo. Many thanks to Elizabeth for the beautiful design. The image is perfect for our mission and is a wonderful way to honor our little girl.

Reaching Out

If you know of anyone who has spent any time in an NICU, who lost a baby or who just wants to help out, please pass along our information: http://www.ellashalo.blogspot.com/, http://www.ellashalo.com/, or have them email us at ellashalo@hotmail.com. We want to meet as many people as we can, learn their stories and find out what might have been helpful to make their hospital stay more like home. We are reaching out to our families and friends for your help to raise awareness of Ella's Halo and keep spreading the message. Now that we are officially incorporated, we want to get as many people involved in accomplishing our mission as we can. So please pass it along to everyone you can think of. We appreciated everything you have done for us, and appreciate all the help and support you have shown us over the last six months, and now we are asking for your help as we get our nonprofit off the ground. We are reaching out and wanting you to help be part of Ella's Halo.

A Moment

After all of this time it still catches me in a moment. Sometimes in the middle of the day, in the middle of a thought, in the middle of a blink, in the middle of a breath. It will linger all day or last just a brief moment, but it is always there. I feel it when I close my eyes, when I am walking down the street or when I lay in bed. It catches me when I least expect it and it holds on to me forever. That sadness…that pain that is still deep within our hearts. And the very worst part is that the minute I think I’m past it, it starts all over again. It catches me and reminds me how much I love her and how much I miss her.

Big Hearts

Ever since Ella came into this world, we have been surrounded by people with big hearts. Whether it is sending us a sweet email, leaving us a sincere message on our voicemail, writing a short note on our caring bridge and now our blog, sending us beautiful cards, giving us a gentle hug, smiling a kind smile, or hearing the prayers that fill the air, we have been surrounded by people who care, love our family, and want to help us make it through this part of our journey.

And on Thursday night, our home was filled with three amazing women who have three of the biggest hearts. We had our first board meeting and my heart was so full with love and admiration for these women. They are taking time out of their own lives to help us accomplish something we have so much passion for, helping other babies and families. Our meeting lasted much longer than was planned, but ideas were pouring out, stories were shared, and love filled our little dining room. After the meeting was over, Ryan and I looked at each other and knew that we couldn’t have asked for a better board for our nonprofit. That each one has and will bring a different aspect to Ella’s Halo and will help us be successful. We approved our Articles of Incorporation and Bylaws, we set goals for the next year, and came up with so many ideas that will eventually help so many people.

To top it off, the day after our meeting, Ryan went to the Minnesota Secretary of State’s Office and filed our Articles of Incorporation. So as of October 16, 2009, Ella’s Halo is a corporation. And with big hearts we are going to start doing some big helping.

Candle of Remembrance

October is the start of fall but it is also Pregnancy and Infant Loss Month. Ronald Reagan designated the month of October in 1988 as "Pregnancy and Infant Loss Awareness Month.” It is a way to honor not only our baby angel in heaven but all babies who flew up to heaven way too soon.

And today, October 15th is Pregnancy and Infant Loss Remembrance Day. It is a day to remember all of the little ones we have lost through miscarriage, stillbirth, SIDS or newborn death. Each loss is just as painful for the loved ones left behind and we can all come together to recognize our losses, to heal together, and remember our beautiful babies. Our little angels are all together, playing and dancing, waiting for their mommies and daddies to join them someday in heaven.

I never knew about this day until Ella was gone and what a beautiful way to remember her. I love that today we will light a candle and remember the hope she brought to us, the love that filled our hearts, and the lessons she taught us. Her short time here with us brought so much meaning to our lives. Now because of her, we are starting an amazing new journey. Starting an organization that I believe will someday help many babies, many families, and many nurses in a NICU, just as she would have wanted. Ella Jo came here to do what she was meant to do and we will forever be so grateful. So today, October 15th we light a candle to remember a sweet beautiful little angel who is dancing up in heaven to Twinkle Twinkle.

Mission Statement

Ryan and I have written the mission statement for Ella's Halo. It combines all things that we want our nonprofit to be, do and accomplish. Not only will Ella's Halo be in memory of our little girl, it will also be a lasting impact on other families and babies who have spent extended time in a NICU.

Our Mission states:

Ella’s Halo is a non-profit organization that was developed to help improve the quality of extended stays in Twin Cities’ NICUs (Neonatal Intensive Care Units). Our mission is carried out by providing a variety of items to NICUs, babies, and their families to help impart a better sense of home while in the hospital. Ella’s Halo accomplishes this through fundraising efforts, community events and education.

Not only do we have our mission but we have our first board meeting scheduled for October 15th. We are so excited to get things started. October 15th is our first board meeting but it is also Pregnancy and Infant Loss Remembrance Day. Please light a candle on this day to honor all of the little babies who have gone too soon. Ella's Halo will officially have its first meeting and we couldn't think of a more special way for us to remember Ella than to kick off our organization on this day.

Happenings

So much has been happening the last week. We have met with a representative from the hospital about setting up a fund, met with each board member and officially have set up our board of directors for Ella's Halo, and started our website.

We met with a woman from the hospital last week who will be able to help us set up a fund where Ella's Halo can donate money. That money will then be used towards purposes that we choose along with the help of the NICU staff being able to use the money towards items they wish to purchase as well. It is one of the many options that we have that will help benefit the NICU. Nothing has been done yet but we received so much information and she will be a wonderful reference for us to use in the future as we get Ella's Halo rolling.

Also Ryan and I meet with all of our board members and have officially asked them to be part of Ella's Halo. We are so excited they all accepted and want to help us make a difference. We have three board members along with myself who will be major assets to our nonprofit. We have someone with legal background, someone from the hospital who knew our little girl Ella, and someone who has had babies in the NICU too. They all bring wonderful experience, are all compassionate individuals, and have blessed our lives. We are in the process of setting up our first board meeting so we can get our Articles of Incorporation filed so Ella's Halo can officially be a corporation.

And finally, Ryan has set up a website at http://www.ellashalo.com/. We are still working out the details getting information posted, formatting and design but at least we have the domain name saved. We are also meeting with one of Ryan's coworkers next week and discussing our logo. She has been working on it and will be letting us take a sneak peak next week. I am so glad she is helping us out as she is an awesome designer.

On a side note, October is Pregnancy and Infant Loss Awareness Month. What a perfect month to get Ella's Halo set up and filed with the state.

Rain

It is raining here in Minneapolis today. These types of days bring me back to the day Ella left us; it was a beautiful summer day. The sun was shining when we got the call and ran as fast as we could into the hospital. We were there for hours and when we said our goodbyes and came out that sad night it was raining…..not a hard rain but a soft warm rain. It almost felt like God was crying with us and hugging us at the same time. Now every time it rains it brings me back to that night we left the hospital for the last time. Sometimes my sad emotions come back and other times it brings me peace. I know that it is okay to cry after all of this time, it is okay to let others hug me when I am down, and it is okay to be sad sometimes. Rain is beautiful, peaceful and comforting…I know it is God’s way of letting us know that he feels our pain too.

Twitter

Ella's Halo is now on Twitter. Follow our journey every step of the way at https://twitter.com/EllasHalo.

Starts with a Name

We received our paperwork from the Secretary of State's Office in Minnesota. Our name Ella's Halo has been filed with their office and it is now a registered name for our nonprofit as of September 22, 2009. We are slowly moving things forward and it all starts with a name!

One Year Ago

One year can definitely change a person. I am one year older today, last year I was only 28! My heart is bigger, I am more compassionate and want to help ALL sick and tiny babies, last year I just wanted a baby of my own. This year I am a mother, last year I was just a wife to my loving husband. This year I have a baby angel in heaven, last year I was trying to get pregnant. This year I am stronger…..stronger than I ever thought I was, last year I was weak and didn’t think I could take what life was going to give me. This year I have lots of wrinkles from a few months of stress, last year I was afraid of getting old and of getting one gray hair. This year I finally get what life is all about, last year I was just living and doing what I “thought” was important. This year I am wiser, both medically and spiritually, last year I pretended I knew it all.

Life doesn’t always go as planned. But maybe that is part of the wonder of it all… it is part of the ride that we are all on. I know that we have had a difficult year but I feel blessed that we got to have an angel enter our lives for a brief moment; she helped me grow into a better person and she challenged me to see that there is a bigger part to life. In the end, Ella helped to make me someone more than I thought I ever was or could be. She helped me to open my mind, my heart, my arms and my soul….I thank my lucky stars for my little angel and for another year to do what I should have been doing all along.

Inspired

Ryan and I attended a Non-Profit Class through the Minnesota Council of Nonprofits today. We both learned so much and got so much information to help us get started in setting up Ella’s Halo. Things don’t seem as daunting or as hard now that we have taken the class…things seem to make a little more sense and the forms don’t seem as scary. It was hard trying to find all the correct forms and paperwork that needed to be done when we were just searching by ourselves. It is so nice to know that we have a reference of professionals who will help us, websites that give us up-to-date information, and a network of others who are in the same position as we are. Now I feel inspired to start working on the first few forms and making our ideas into a reality.

We were also so inspired by the 25 other people in the class today. They are all passionate about their ideas, determined to do whatever it takes to get something started, and genially concerned to help others. I feel that we were surrounded today by good people who are going to help make this place a little better by making their own ideas into realities, just like how we want to make the NICU a little more like home.

The Sweetest Thing

We are surrounded by so many generous and caring people. Ryan and I keep getting asked how others can help...and we really aren't quite sure yet. We are still working out all of those details and trying to get Ella's HALO set up legally that we haven't figured out what others can help with yet.

However, a very sweet and thoughtful family in Chicago decided that they wanted to help. Anne contacted me and said that she was going to get in touch with the Children's Memorial Hospital in Chicago and see if they would like to have blankets donated. Her blog shares their story and tears came to my eyes as I read it and I saw the pictures of her beautiful little girl sitting by the stack of blankets they donated. It is such a wonderful story and I know that our little girl Ella is smiling with pride at what their family has done for other babies and families in the NICU in Chicago. Not only is our little girl smiling from heaven but I am sure there are a few mommies and daddies in Chicago smiling too because of their generous donation.

I never imagined that our little idea would spread to other cities. I can't even believe all of the support we are getting from our friends here in the Twin Cities. It is the sweetest thing that others see there is a need to help NICU babies have the feeling of home while they are in the hospital. That those sweet little comforts of home help to make life more bearable, a little more hopeful and definitely more special for those little babies while they are in the hospital here in Minneapolis...or Chicago!

Goodbyes

Over the weekend Ryan and I, along with our families, buried our little girl at a small country cemetery. It was a beautiful day, the sun was shining and the birds were singing. We celebrated her short little life and the love she brought to all of us. We know that it isn't goodbye forever and that someday we will all get to join her.

We picked a lovely spot for her to rest. She has a beautiful view of the countryside, among the big sky full of stars and under a big old shade tree. She is away from hospitals and noise, away from the busy life she lead. Her spot is a place that is peaceful, something Ella deserves after her long struggle.

We had a gorgeous day. We sang Twinkle Twinkle, she was surrounded by many loved ones, her daddy and I each wrote her a little note and we didn't forget to have lots of pink!

Goodbye for now little girl. We know we will see you again someday but for now just keep dancing.

Baby Steps

We are slowly moving Ella's Halo forward. In my previous post I said we are attending a non-profit class which Ryan and I are both really eager about taking. But in addition we recently were in touch with a person from the hospital who works with helping organizations get their donations and ideas to certain units within the hospital. I spoke with her on the phone yesterday and she will be such a wonderful reference for us to have. The three of us are going to meet at the end of the month to put our ideas together, have her give us suggestions about funds we can set up within the hospital, and to have lunch to get to know one another. I am so excited to meet with her and to talk about these ideas with someone who will be able to help us get our organization moving in the direction we want it to go.

Things are coming together so that we can get our dreams for Ella's organization rolling into a reality. Now Ryan and I have to sit down get our ideas, mission, and plans all down on paper so that we have something concrete. We usually just start pouring out ideas and plans while we are laying in bed, driving in the car, eating dinner, or missing our little girl. Our heads are full of possibilities but we just need to take it one idea at a time, one form at a time, one minute at a time, one baby step at a time.

Milestones

These little milestones.....they are moving us through this difficult first year. Yesterday was 5 months since the day our precious little girl came into this world. I will never forget that day... Ryan and I were both so scared, happy, sad and excited. All of those emotions were wrapped into one precious moment, the moment she came into this world and changed us forever. I just remember the pride beaming from her daddy, the love that filled our hospital room, and the moment she took my breath away. The beginning is where I am going to start our milestones...not the day she left us. This is not the end. She is waiting for us up in heaven playing, singing, watching and loving.

Our grief has also came in milestones. At first we were numb...the first day, week, month. We were both so numb to what happened and how our lives drastically changed. After the numbness wore off we were angry and asking why God did this, why he took our little baby. Now I am trying to understand what grief really means to me, to us. We have lost loved ones in the past but this grief was new...more painful. I now believe grief as an emptiness and a fullness within my heart. One moment grief can bring on an unbelievable emptiness. An emptiness from missing our sweet little baby every breath that I take, from feeling let down by life for not being able to watch our little princess grow up, and from the pain I now carry everywhere I go. But at the same time I have a fullness within my soul. A fullness knowing that my little baby is at peace in the most beautiful place, knowing that we were blessed to have been chosen to be this little angel's parents, and knowing that we will see her again and that this is not the end. I know we will forever have grief buried deep within our hearts but at least we are coming to understand what it means for us.

Another milestone is happening in our non-profit research as well. Ryan and I are taking a class to learn how to start a non-profit in September. We thought we would take a class and learn as much as we can so that we can be well educated and make informed decisions on how we want to go forward in making our organization right for us. We will be the main people involved with the organization and felt that it was best if we knew what we wanted, how to run it and how to maintain the business part of the organization. We wanted to know all aspects rather than let someone else work out the details for us. We will still need help with some of the paperwork that needs to be filed by attorneys but we want this organization to be all of our heart, soul, sweat, tears and love.

A Sweet Poem

The day Ella died we received this wonderful poem from Ryan's cousin's wife, my dear friend and Ella's auntie Tracy. I love how it has everything we want to remember about our little girl all wrapped up into one sweet little poem. Thank you Tracy, it is a gift we will treasure forever.

The Tiniest Angel

The tiniest angel has sprouted her wings
She looks up at Jesus as Heaven’s choir sings
We know that she feels all our prayers and our love
As she’s cradled in the arms of our God up above.

Little baby Ella so precious and sweet
The most special little girl we could ever hope to meet
She came to us briefly and couldn’t stay long
But the love we all feel will remain to be strong.

A mother and father who miss her so much
And long for just one little kiss or a touch
Hold tight to each other, as grief will unfurl
And cling to the memory of their sweet baby girl

Ella we know that you miss Mom and Dad
And it’s hard for us all to see them be so sad
But we know you’re at peace and no pain you will know
And though they can’t see you their love will still grow.

We’ve all been so touched by your short precious life
And though this sad time will most surely bring strife
We celebrate the love that you brought us on Earth
From the happy news of pregnancy to your premature birth.

We couldn’t have known what a blessing you’d be
A sweet little angel sent for all of us to see
You’ve done so much good that you can’t possibly know
As you laid in your isolette struggling to grow

Your daddy and mommy were there by your side
So happy to have you and beaming with pride
They told us great stories of all you would do
From reading you books to your pink bow hairdo

They were there by your side keeping watch every day
And the rest of us all bowed our heads as we’d pray
For sweet Ella Jo to get bigger and stronger
But God missed you so much he couldn’t wait any longer

He brought you to heaven to live with him now
And as your family and friends we will all take a vow
To remember the love and the joy you brought here
And to think of you fondly each year after year

So as you now enter Heaven feeling peaceful and free
We know through your tiny eyes you’ll start to see
That though Mommy and Daddy may seem far apart
There’s no need to look further than your own little heart

For down deep inside there is where you will find
A love and affection of the most special kind
You’ll be with them always and forever you’ll be
Their sweet Ella Jo – their precious baby.

With love, "Auntie" Tracy

Ella's Blankets

People keep asking us why we have decided to start an organization. I guess it all started the week Ella passed away. I kept thinking how I needed to do something to help the other babies that were still in the hospital...they were Ella's friends and I needed to do something to make those long hours, days, weeks, months a little brighter for them. I am not sure if it was my way of grieving or if I just needed to keep moving. But I went to a fabric store and went crazy buying fleece. All different kinds that I knew Ella would have loved....or at least Ryan, I, and our nurses would have liked. I bought princesses, Twins, flowers and trucks.

The next day Ryan and I brought all of those blankets to the hospital and met up with the nurses. You should have seen their faces. They looked as if I brought everyone Christmas gifts. It was the best feeling in the world. One of the nurses said, "Every time I see these blankets, I will think of Ella Jo." I cannot even write into words what that made me feel like. I just melted and we knew we had to do something like this again...but something more.

So, later that night Ryan and I went home and started brainstorming. We had ideas one right after another for things we would love to provide to the NICUs here in the metro. I guess we didn't realize that what we wanted to do was a difficult process. If starting an organization was easy everyone would do it...right?

We are trying to figure out what the right path is for us so that we can keep giving back to the people who have touched our lives. It is the one way we can still feel close to our little girl, a way for us to find peace knowing that our family’s difficult path has lead us to help others, and that Ella's struggle won't be forgotten.

Providing cute, fun blankets is just one of the few things we want to do with Ella's HALO. I know it doesn't sound like much but sometimes it is the little things that mean so much. I can still remember walking in to see Ella after her nurse just got her a clean pink blanket and put a cute little matching pink bow in her hair. Ella knew she was all dolled up, you could just tell. When your baby is sick, in a hospital surrounded by machines, and the only thing you want to do is provide some normalcy for your baby...tucking your little princess in at night with a pink princess blanket just makes things seem a little more right, a little more hopeful, and a little more like home.

Tiny Angel

Ella Jo Krumwiede was such an inspiration to Ryan and I. I still can't believe that she is gone....it still doesn't feel real. She was our whole life and I never knew how a tiny little baby could teach us so much about love, hope and faith in such a short amount of time.

She was born premature and was a very sick little baby, but she was such a fighter, a little feisty at times, and full of love. We want our little girl's memory to help other babies and families who have to spend many hours, days and weeks inside a hospital waiting, praying and hoping to bring their baby home someday. We want to help make their stay a little more like home. We were so blessed to have family and friends help us along our long scary journey but some babies aren't so lucky.

Ryan and I are full of ideas of things that we wished we had while in the hospital to help make things a little easier. We just hope that we can bring a smile to a mother's face after she has been up all night by her baby's bedside or make a dad laugh after he has cried all day long.

Ella was our little girl, her daddy's peanut, and her mommy's love. She liked to wiggle her toes, squeeze her daddy's finger, let her mommy kiss her feet, peek out at her nurses, dance to Twinkle Twinkle, cuddle sweetly with her mommy, gaze into her daddy's eyes, be spoiled by 4 uncles, keep the doctors guessing, and knew how loved she was by her grandmas and grandpas. Our little baby is now our little angel in heaven...and she probably is still dancing to Twinkle Twinkle.

If you want to bring smile to our face and joy to our hearts, ask us about our sweet little Ella Jo. Nothing brings more happiness to us then talking about our memories of her short little life. We know that starting an organization in her honor is going to be a slow process and not happen over night. But we still want to do what ever we can for other little babies who are in the NICU. That is what Ella would have wanted us to do.

She was only here for a short time (83 days to be exact) but we hope her memory will live forever in the help we provide to other little ones.

Welcome

So we are finally making steps to create a foundation in memory of our little girl Ella. We are still working out the details of Ella's HALO but basically we want to help make hospital stays in Neonatal Intensive Care Units (NICU) for premature and sick babies a little easier for them and for their families. Make their long stays feel a little more like home!

Our blog will be the source of information until we get our website up and running. It will be a way for us to connect with you about our many ideas for Ella's HALO and a journal of two parents who miss their little girl.

If you just are learning of our story here is the link to our daughter's caringbridge site so you can catch up http://www.caringbridge.org/visit/ellakrumwiede.

We will be meeting with an attorney from my office today who will give us some ideas about what paperwork we need to file to help us get started. There is a lot of work in getting something set up so we will keep you informed along the way.

Ella is surely smiling down on all of us and happy that we are helping her many friends in the NICU!