Turtles

On Friday June 24th, Ella's Halo sponsored a turtle at the University of Minnesota Amplatz Children's Hospital Turtle Derby.  It was the 25th year that the hospital did this fundraiser for families, patients, hospital staff and community sponsors.  It was a beautiful summer afternoon outside the new hospital. 

The new University of Minnesota Amplatz Children's Hospital!  Home of the 25th Annual Turtle Derby Day.  Click here to read about the hospital and their Turtle Derby.

Ella's Halo's Turtle did not win, but it was a fun day raising money for the hospital so they can provide comfort items to their patients and families.  Even making the day a little more perfect, all of the turtles were brought in from our hometown, Perham, Minnesota!

Daddy

Happy Father's Day to all Dads! 

Thank you for spending time with us doing the things we love.

Thank you for holding our hands when we are scared.

Thanks for cuddling us when we need a little extra love.

And thank you for all of the good night kisses.

Music To My Ears

Today marks two years since we lost our sweet Ella. There are many things we miss about our little girl, but one thing I know we both miss is sitting by her bedside listening to music.  When Ella was in the hospital, she loved listening to her lullabies.  We listened to Twinkle, Twinkle, You Are My Sunshine, and Somewhere Over the Rainbow on repeat for 83 days.

As June 16th seemed to approach, I was trying to find our little something special we could do to remember our angel.  So last week Ryan and I went for a walk around one of the beautiful lakes in Minneapolis.  We stopped and listened to music at the Lake Harriet Band Shell and had ice cream.  The park hosts music every evening during the summer and it is free to the public so we decided to stop and enjoy the sounds.

It was a nice summer evening and as we listened to music we glanced down and saw names written in the pavers.  The park sells pavers by the band shell and you can have names, quotes or anything etched and personalized! It was perfect and almost like some little angel tapped us on the shoulder and said I belong here. It felt perfect to have Ella's name etched in a paver and placed in front of the band shell so that she can enjoy music by the lake.

The Lake Harriet Band Shell.  The pavers are now placed under the benches.

Every evening during the summer there is free music for the public to enjoy.

This is the lake behind the band shell where we release Ella's birthday balloons. 

We can't wait to go to our little lake and see her name as music is playing in the background.  It just sounds like music to my ears.

Happy Angelversary Ella.  We miss you every day!

Here is the link to the park page to learn more http://www.peopleforparks.net/index.html

Lessons Learned

My sweet little girl has taught me many lessons.  Here are just a few little lessons she has left me with.

1.    Life doesn't go as planned.  So I need to stop planning each little detail of our life and sit back and enjoy the ride. 

2.   There are just some things that are simply out of our control. No matter how much you pray, how much you wish on shooting stars or how determined you are, sometimes you have to sit back and put it into God's hands.

3.   Even when you don't think you can keep going on, somehow you still do.  We are all stronger than we ever thought we could be.  Looking back over the last two years I see how much this experience has changed us and how we have gotten so much stronger.

4.  We regret more about the things we didn't do than the things we did do.  I have learned to take more risks and do things I believe in because I don't want to look back on my life and think I should have followed that dream.

5.  I have learned that it is not what you have in your life but who is in your life that really matters. I am reminded by this every day when I look at my husband and remember my sweet Ella.

6.  Life is a journey full of obstacles.  We will have challenges along the way but I need to use these experiences to help make me a better person. If life was perfect we would never have a chance to find ourselves.

7.   Live your life how you want to live it, not how people want you to live your life. Never follow the traveled path, because it will take you where others have been. I tend to do what others sometimes expect of me and have learned that sometimes we all need to find a new path.  Probably the least expected way.  Luckily our new path lead us to Ella's Halo.

8.   Enjoy life because we might not have the chance to do it tomorrow. Life's too short. Live everyday to the fullest, laugh when you can, and love with your whole heart.  Ella taught us that you just never know when your last day will be so live everyday like there might not be a tomorrow. 

9.  Every day may not be good, but there's something good in each day. It is okay to have a bad day but don't forget to look for the little things that make each day a little better.  Twinkling stars, a singing husband, warm coffee, or a pink sunset.  I have learned to look for these sweet little things each day.

10.  Nobody can do everything, but everyone can do something. Ella left me with a passion to help others.  I may not be able to change the world, but knowing we are helping one baby or one family in the NICU is the something I need.

Terrible Twos

One week from today will be two years since we lost our little girl.  I can't believe how it has already been two years and how vivid those memories of that last day still are and probably will always be.

I know that if Ella was here we would be going through the terrible twos with a little toddler.  I sometimes picture how different our lives would be with a spoiled little blond haired girl running around.  But now, the terrible twos has a whole new meaning to us.  As parents who are grieving the terrible twos means something so different. 

The first year after Ella passed away, it was very difficult.  I believe we were just trying to survive and get through that first year together.  It was hard year, I cried so many times, my heart always hurt and I felt that we would never be really ever as happy as we once were.  People wanted to hear our story, ask us questions about our baby girl, how we were doing and even let us cry on their shoulders. People expected this from us and didn't seem to think it was weird or strange for me to get tears in my eyes when someone would mention her name. 

Now after two years I sometimes think it is even harder. People talk about her less, ask us about her less and people we meet don't know about her.  The pain might be less raw but the pain is there just different. The hurt of having to move on and find a "new normal".   The little sting of someone not knowing about our little girl.  Having others not remembering. The looks of wonder about why we haven't moved on and had another baby.  Feeling guilty about bringing her name up. Knowing that a little bit of her memory and her life is starting to fade away into the past.  To me, that is really what our terrible twos are all about. Two years later and knowing that it is still just plain hard.

I know that even in the years to come it will still be hard, we will still cry, we will always have a  missing piece to our hearts and we will continue to slowly find happiness in our lives.  And sometimes as a parent, you just have to face those terrible twos.

Baby Steps 3K

Children's Hospitals and Clinics of Minnesota hosted an event called Baby Steps 3K and Family Reunion. They raised money for the Minneapolis and St. Paul Children's Hospital NICUs! Walkers helped to raise over $46,000 for the NICUs and over 1,700 people participate in the 3K walk. 

Ella's Halo sponsored the Water Stop during the 3K.  It was so fun to see so many walkers, old and young, out walking for NICUs on such a beautiful June morning. 

We had awesome volunteers helping to spread the word about Ella's Halo and passing out water cups to the many walkers.  Ella's Halo can't wait to help out again next year and support Children's Hospital NICUs!
 

June Feature Family

At the beginning of each month Ella's Halo will have a NICU family tell their story about life in the NICU with their baby. Our hope is that by featuring different families others will have a better understanding of the difficult, roller-coaster ride many face when their baby is in the NICU.  Ella's Halo created the Feature Family series, if you are interested in sharing your story , please email us at info@ellashalo.com to share your NICU story and to be a future Feature Family.

June's Feature Family were in the hospital the same time we were there with Ella.  Evelyn Titus was Ella's first little friend and neighbor in the hospital.  Just this past month the Titus family was helping to support Ella's Halo at Bowling for Babies!  It was so nice to see their little girl enjoying the day and bowling to help other little NICU babies like her. 

Evelyn Titus

Written by Amanda Titus

Former NICU Mommy

Our story starts at the 20 week ultrasound. I will never forget that ultrasound and the technician who seemed very nervous – so nervous that we thought he was new! Turned out he knew something was wrong with our baby. The ultrasound showed very little fetal growth since the last ultrasound 10 weeks earlier. I was immediately afraid for our little girl’s life! We were referred to the University of Minnesota and met with a specialist and had more ultrasounds at 23 weeks and 26. Both showed the same thing – little fetal growth. I guess you could say we knew we were going to have a preemie by this time, especially when the doctor told us we would be lucky to make it to 34 weeks.

At 28 weeks I was admitted to the hospital on bed rest. At the end of my 30th week, I had an ultrasound that showed that my little one had grown very little since the last ultrasound. The doctors made the decision at that time to deliver.

On April 20, 2009 at 31 weeks 1 day we were blessed with Evelyn Grace. We had no idea what to expect. We were very lucky that at Evelyn’s birth she was crying and breathing! She was small at 2 lbs 1 oz. We were lucky enough to even hold her right away! This began our 62 day stay in the NICU.

We live 2 hours away from the hospital. We were very lucky that I was from the Twin Cities and all of my family was still in the area. They were my support system when my husband was back at home working. I stayed with family during the whole NICU stay and my husband would come on weekends after work. Unfortunately, my husband lost his job just a few weeks into Evelyn’s NICU stay. It did turn out to be a blessing in disguise because he was able to be with us in the hospital all the time.

The NICU was a difficult full time job. I would leave at 9am and not get back to a bed until 9, 10 even 11 pm. I couldn’t stand the thought of leaving her at the hospital alone yet I needed sleep to function. I was lucky that I was able to sleep the few hours I had available for sleep. The first time I left Evelyn in tears was about a week after she was born. We were visiting her and were able to hold her. As I was holding her though, her oxygen level would drop. She was stressed out because I, her mom, was holding her. It broke my heart! I left many other days in tears also – when I realized that I was unable to pump enough breast milk for her, when day after day after day I had to leave her at the hospital just waiting to be able to take my little girl home!

The most stressful part for me was not knowing what would happen when I walked into the hospital room each day. Usually for Evelyn, we would find out she had a lot of desats (her oxygen level would drop) and they had to put her on oxygen. Our other challenge was eating. We spent countless hours with Occupational Therapy teaching Evelyn how to eat. We tried different nipples and different techniques to give Evelyn the optimum eating situation – we would have her wear just a onesie to keep her cooler and more awake, we would wrap her in a blanket really tight to keep her attention on the bottle, we would sit her straight up and tilt the bottle up for 5 seconds so she could take a drink and then put the bottle back down to give her a rest, we didn’t allow Evelyn to eat more than 30 minutes at a time – more would burn more calories than she ate in the 30 minutes. These are things that I don’t think the average mom or dad has to think about.

Evelyn finally learned to eat just a few days before her due date of June 21. We went home June 20, 2009. I don’t think I had ever been so happy in my life and what a wonderful Father’s Day gift for daddy.

Two years later, Evelyn is still behind developmentally. She started walking at 23 months. She has a lot of problems gaining weight which is common for babies born so little. At two years of age, she is not quite 20 pounds yet. We have dealt with our fair share of lung problems like pneumonia and respiratory distress that first year of her life along with two hospital stays. The first year of her life we only took her to daycare and the doctor for fear she would get sick again. The latest condition we found out she has is aspiration. We now need to thicken everything she drinks to the consistency of honey. All in all, she is doing great and one day, no one will even know she was a preemie!