Top Ten Tuesday

Sometimes I think about our time in the NICU.  It amazes me how I still miss things about the NICU.  You aren't supposed to want to be there, you aren't supposed to grow to love things about the hospital, and you aren't supposed to develop good friendships with the doctors and the nurses.  Here is my top 10 things I miss about the NICU.

1. I miss knowing that a little girl was waiting for me to get to the NICU every morning and she would be so happy she would wiggle her toes in excitement when she heard our voices enter her room.

2.  I miss my daily coffee runs for cold de-caf frappachinos for me and for the nurses and having the coffee guy downstairs know exactly what I wanted before I ordered.  It was the only thing I could count on being the same each and every morning.

3.  I miss the humming of Ella's vent and the beeps of the machines.  It is all we ever heard when sitting next to my baby girl's bedside.  Her humming vent would sometimes put me to sleep.

4.  I miss hearing her nurses call her Tootsie and putting pink little bows in her pretty blond hair.  Ella's primary nurses paid special attention to our little princess making sure she was always well cared for, that she had the cutest blankets, and the sweetest pictures hanging on her walls.  They not only took care of Ella but provided constant hugs and support for us too.

5. I miss the morning and evening rounds the doctors and staff did regarding Ella's health.  They made us feel like part of her care team and let us know that we were her biggest advocates. Our voice mattered to those doctors.  They wanted to teach us everything they could about her care so that we could better understand therefore be better parents to our preemie daughter.

6. I miss taking her temperature and changing her diapers.  Those are the very few things we could do for our baby and each day we took pride in doing these simple things for our daughter.  I would even get super excited over a poopie diaper.  I love those nurses for helping us feel involved and needed as Ella's parents.

7.  I miss kangaroo care.  Kangaroo care is when a mother or father gets to snuggle with their little preemie, skin to skin. I got to hold Ella a few times in kangaroo care and we would cuddle for hours.  She would even make sweet little noises letting us know that she liked it too. 

8.  I miss the smell of the soap in the hospital.  I know this sounds odd, but after washing your hands constantly for 83 days, the smell sort of grows on you!

9.  I miss going down to the cafeteria or into the family room to make a quick phone call and running into other parents of NICU babies.  Without knowing anything about them, they became instant friends because they know all too much about the NICU rollercoaster.  The common thread of NICU life runs deep in all parents who has ever had a child in the NICU.

10.  I miss when Ella would squeeze our fingers and we would rub her blond little head.  She would peak out at us just to make sure it was her mommy or daddy comforting her.   We would hold her little hand for hours and she would never want to let go of our fingers.  We would kiss her little toes and her sweet little checks to show her just how much we loved our baby girl.

If you have been in the NICU, what are some of the things you miss?

Halo Happenings (August Edition)

Since so much changes around here and so quickly, I thought it would be fun to do a monthly update called Halo Happenings which we will feature on the 25th of every month. Obviously as things come up, I will still post about what is going on with Ella's Halo but thought Halo Happenings would be a good look at what is to come.  We hope to eventually launch this into a quarterly newsletter that we can send out to our supporters and donors very soon.

Coming up on August 30th, Ella's Halo will be serving dinner at the Ronald McDonald House again.  Last year we had so much fun helping families with sick children in the hospital while giving them a warm meal, that we decided to do it again this year.  We posted a vote on Facebook about what we should serve and tacos won.  We will be having a taco bar and enjoying a fun evening with families.

Also we are excited to have added a new board member to our group. Angela Kruchten will be working with us now and we are excited to have her enthusiasm and networking skills to add to Ella's Halo. Welcome aboard Angela!

We have two exciting events coming up this fall as well.  We are gearing up for a book drive and also for our 2nd Annual Strides for NICUs 5K and Family Walk in Perham, Minnesota.  Dates and information will be coming out very soon!  We are so excited to have had Small Bird Studio design our new logo for our Strides event.  So check back soon for our upcoming event information!  We have exciting things happening this fall!

Don't forget our Macy's Shop for a Cause this Saturday August 27th. Donate $5.00 and receive a coupon to get 25% off at Macy's. Who doesn't love to shop especially when you know you helping babies while you SHOP!

And also our blog has been nominated for Best Blogger by Parents Magazine.  We are so honored to be part of this group of awesome bloggers.  Please take a minute to go on and vote for us!

Miracle

Kids' Company

I love it when we get emails from people wanting to help support our cause and/or wanting to donate to Ella's Halo. I love it even more when supporters approach us with their own idea about how they can help Ella's Halo. 

Kevin from Kids' Company in Prior Lake, Minnesota contacted me and wanted to find a community service project his 5th grade class could do this summer.  Together we came up with a blanket/book drive and from there the kids took over and did all of the work arranging the donations and making blankets.  What an awesome lesson for these kids to learn about helping their community and others in need. Plus we got to go and talk to them and thank them in person for all of their hard work.  It was a fun day meeting all of the 5th grades that are helping us continue our mission, and the hugs and high fives were pretty fun too.

Check out the story and pictures about Kids' Company helping Ella's Halo.  Prior Lake American Newspaper did a feature story on August 5th with a follow up story coming out this week. 

Local angels help ‘Ella’s Halo’
by Meryn Fluker
Prior Lake
August 05, 2011

WestWood Elementary School’s halls are full of students, in lines, in pairs or alone, with adults guiding and directing them, even though it’s summer. Winding through the building’s maze of corridors – forward, a quick left, then a right – punctuated with easels reminding students of the activities they’ll soon participate in, eventually you’ll come to a bustling room full of excited fifth-graders and the adults who care for them.

On Tuesday, the room’s floor was dotted with partially finished “no-sew” fleece blankets, the cozy and colorful leftovers of a morning activity and the child care’s latest charitable venture.

Since last week, Kids’ Company students in grades four through seven have directed their energies toward benefiting Ella’s Halo, a Richfield-based nonprofit dedicated to easing struggles for families of children born prematurely. The fifth-graders, corralled by Site Leader Kevin Humbert, have taken the project’s reins. The students drew and designed posters advertising the drive, which collects books and disposable cameras for Ella’s Halo to provide to families whose children are in neonatal intensive care units (NICUs), and also decorated boxes to hold donations. Area parents Ryan and Taryn Krumwiede founded the charity in late 2009 and named it for their prematurely born daughter Ella, who lived in an NICU for 83 days before passing away.

“One thing the hospital lacks is small comforts of home, those personal items new parents have for their newborn babies,” Taryn Krumwiede said. “Having a special blanket to wrap Ella in was important to us, and it helped us be able to feel like her parents even though doctors and nurses were really taking care of our daughter on a daily basis. We felt that others in the NICU missed those small comforts of home, too, so we wanted to do something to help bring that into the hospitals.”

The Kids’ Company fifth-graders got crafty, making five sizes of the no-sew bed and crib coverings – often called “tie blankets.” That day, trios and quartets of students made about 30 blankets, 10 more than Humbert had anticipated.

“I was obviously excited that we were able to exceed that goal,” he said. “We had 37 kids and every single one of them participated.”

The students participated despite varying levels of familiarity with the craft.

“In third grade, we had something just like this, where we made blankets and scarves,” said 11-year-old Cameron Mathis of Savage.

“I knew how to tie them because I was in Girl Scouts, but I didn’t know how to measure and cut them,” added 10-year-old Leah Keil, also of Savage.

Cameron even made an extra blanket in his group. The students cut and measured the fabric and tied the fleece pieces together, completing the blankets in time for an Ella’s Halo representative to pick them up. The blankets are made to fit beds in Children’s of Minnesota’s Minneapolis and St. Paul hospitals and the University of Minnesota’s Amplatz Children’s Hospital.

Humbert was unaware of Ella’s Halo until he began organizing Kids’ Company’s involvement.

“I was kind of struggling with, ‘How far do we want to go with this?’” he said. “As site leader, I kind of felt like it was my duty to get it started.”

Humbert is supported by co-site leader Katie Youngblut and assistants Jessica Arseneau, Renee Orton and Jean Borger.

“I think it’s fabulous,” Borger said of the project.

Though Ella’s Halo helps families of children far younger than the Kids’ Company fifth-graders tying those blankets, Humbert thought the two organizations were a great match.

“I think because it’s for premature babies, they can make that connection more, because many of them have little brothers and sisters who are babies,” he said. “I just think they’re at the age where they’re able to appreciate the cause.”

Krumwiede is excited by Kids’ Company’s involvement and said it would be a “great lesson” for the students that will last a lifetime.

“I love the fact that other children are organizing this drive and wanting to give back,” Krumwiede said. “Not only is Kids’ Company helping the families and babies in the NICU, they are also learning life lessons about giving and caring for others in need. We are so thankful for their kind donations and for them wanting to support our cause.”

Humbert worried that the students would struggle with the work, even though they’ve done community service crafts this year and in past sessions. The students trust Humbert and responded positively to making the blankets for Ella’s Halo. Ten- and 11-year old girls chase Humbert as he moves throughout the room, calling choruses of “Kevin” – the leader swears he hears his name 4,000 times daily at work.

“I think it’s pretty helpful,” Cameron said. “It was pretty fun. I wouldn’t mind doing that for an hour a day every day or once a week, making blankets.”

WestWood Elementary- 5th Grade Class donating to Ella's Halo

 Check out the article here at Prior Lake American. 

Summer Ramblings

I don't know where this summer has gone. It sometimes makes me so sad to think how fast time is moving.  To think that a little over two years ago we said goodbye to our little girl.  It still hits hard sometimes to realize that our life has continued to move on, our lives have now settled into a new normal, and that we still don't have our daughter.

So as summer is slowly coming to an end, I thought I would do a top five of what we are currently enjoying this summer.

1. Summer Activities: Summer has been filled with picnics, weddings, BBQs, long weekends at cabins, soaking up sunshine, block parties, mini vacations, boating and being with friends.  I really couldn't think of any other way I would want to spend June, July and August!

2.  Sunsets: Pink sunsets out on the lake just melt my heart in the summer.  I love sitting on the end of the dock and watching the sun sink down into the water.  It makes me feel like my little girl is showing me a little piece of heaven. 

3. Baseball Games: Watching the Minnesota Twins is one of our favorite things to do in the summer. Ella was a big fan of the Twins too. Her daddy even bought her a pink bat and ball. We just love going to the games, sitting outside, eating hot dogs and cheering on our favorite team. However, it does help if they are winning!

4. Bonfires: I love sitting around the fire with good friends, telling old stories, laughing until your sides hurt and singing along to music.  Roasting marshmallows for our smores and taking in the stars are probably the best things about summer nights. 

5. Ella's Halo Projects: We are looking forward to the launch of our upcoming book drive, meeting with students at Kids' Company in Prior Lake, Shop for a Cause with Macy's on August 27th, and serving dinner again at the Ronald McDonald House. All of these things in August as summer comes to an end.

What are you enjoying this summer?

August 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.

This family is very near and dear to our hearts.  Their little guy, Colby, was born in March of 2009 and was in the hospital pretty much the entire time we were there with Ella.  We are so lucky to have his parents as friends and to see how much Colby changes and grows.  Colby's parents stayed at the Ronald McDonald House during their NICU stay and is one reason why Ella's Halo volunteers at the RMH. 

Colby Thompson

Written by Heather Thompson

Former NICU Mommy

In early 2009, my husband and I were preparing for the arrival of our first child. The pregnancy was near perfect – just a little bit of nausea in the beginning that only lasted about a week. At the 20 week ultrasound, we learned we were expecting a little boy and that he was measuring exactly to his due date of June 13. Then, on day one of week 27, my water broke. We rushed to Trinity Hospital in Minot, ND (which was an hour away), where we learned the baby was in the transverse position (sideways) and I was fully dilated. During an emergency c-section, the doctor also discovered a placental abruption. Colby was born at 3:14 AM on 3-14-2009. He weighed an even 2 pounds and was 13 ¾ inches long. His early arrival was completely unexpected. Even today, there is no answer as to why he came 13 weeks early.

It was a few hours before I was taken up to my room from recovery. I had developed a fever and was not allowed in the NICU to see my baby. He was a day and a half old before I got my chance to meet him. Thankfully, the wonderful nurses in the NICU had been taking pictures and printing them out for me. Colby was pretty beat up from the delivery – his entire face was bruised, as were his legs and feet. But, he opened his eyes almost right away and had a head full of blond hair. He was handsome. I knew he was small, but seeing him for the first time took my breath away. It is hard to see in a photo just how small these premature babies are. My husband could slide his wedding ring up Colby’s arm with no trouble.

We did not want to go to our home an hour away from our little baby. Luckily, the hospital has a guest house for family members of ICU patients. It is located right across the street from the hospital and was so convenient for us. The first week or so, it was my routine to get up at 3 AM to pump breast milk and when I finished, we would walk across the street to say hi to our little guy. It was my favorite time to visit him. We were usually the only parents there and it was so quiet. We could see Colby and chat with the nurses as long as we wanted. We quickly learned that life in the NICU is a rollercoaster. One day, the doctor is coming to you and preparing you for the worst. The next day, things are better than ever. We realized that with each exam, test, x-ray, and ultrasound, you should never assume the results – you are almost never right. “One day at a time” became our motto. We used the CaringBridge site to keep our family and friends updated on Colby.

Colby was one week old when I got my chance to hold him for the first time. It took a lot of prep work and 2 nurses to get him moved from his isolette over to my arms. I held him for about 2 hours and it was wonderful. For those 2 hours, the worry and anxiety melted away. I was surprised to hear Colby making little baby noises – grunts, groans, and moans. You could not hear those noises when he was in his isolette. Colby was actually a very strong, healthy baby – his main issue was being premature with premature lungs. He was on a ventilator but was doing pretty well. He was getting nutritional supplements and just a few meds that went along with the ventilator.

At 20 days old, things changed. Colby was requiring more oxygen use than ever before. It became apparent we would have to change hospitals. The Trinity NICU in Minot is only equipped to handle a certain level of care, and now Colby needed more than they could provide. The ventilator was too much for his little lungs and began to harm more than it helped. He was developing emphysema and had to be transferred to a higher level facility. At 3 weeks old, he was put on an airplane headed for the U of M Medical Center, Fairview in Minneapolis (now U of M Amplatz Children’s Hospital). There was room for me to fly along, but my husband had to make the trip by car – a 10 hour drive. Once there, we were totally lost. We had to find our way around the hospital and NICU, we had to find a place to stay, and we had to find a way to cope with a whole new set of emotions. Suddenly, we were 10 hours from home with no idea when we would return. The NICU social worker got right to work, and thankfully, the Ronald McDonald house had room for us move in right away. Next began the process of learning the set-up, routines, and staff of the “new” NICU. The first thing the doctor told us was that Colby was doing much better than expected. That was the best thing to hear at that moment. He was put on a jet ventilator, which is gentler for the little lungs of a premature baby. The first few days, there was a lot of “tinkering” with his ventilator settings to get things just right. It was kind of a waiting game.

Time passed so slowly. Looking back on pictures, I realize what was about 2 weeks’ time in my mind, was only a day or two in reality. We had developed a routine that worked pretty well for us. Each day, we’d head to the NICU right after breakfast and hang out there all morning. For lunch, we’d grab something close – either the hospital cafeteria or a restaurant within walking distance. Then, back up to the NICU we’d go until it was time to for the evening meal at the Ronald McDonald House. Of course, as soon as we were done eating, we’d head right back to the hospital until we were ready to get some sleep. Our life revolved around the NICU. Our days were filled with numbers: pounds, ounces, oxygen percentages, milliliters of milk…Family and friends kept telling us how strong we were, but we did not feel strong. Not even close. All we knew was that we had to be there for our baby. There was no choice…you are thrust into this situation and all you can do is try to keep up.

Colby ended being on a ventilator for 6 weeks and 3 ½ weeks later had surgery for bilateral inguinal hernia (groin). 4 days after his surgery, we moved from the Ronald McDonald House into a hospital boarding room to help us prepare for his discharge. One week later, we were told we could take him home. Colby had been hospitalized for 11 weeks (80 days). We had a 10 hour drive home and I was so nervous, I had an upset stomach for probably the first 3 hours. We brought him home on oxygen and a few medicines. He received oxygen through a nasal cannula until he was a little over 6 months old. About a month after we brought him home, we had to return to Minneapolis so he could have surgery again on the groin hernia, though just the left side this time. He was hospitalized overnight and we were on our way home the next day.

Today, he is a happy, very healthy almost 2 ½ year old. He has had a few ear infections that required antibiotics and a couple colds that he recovered from on his own. He is a little smaller than the average 2 ½ year old, but he is within range for his age.We are very aware of how blessed we are. When Colby was first born, we asked ourselves, “Why did this happen to us?” Today we ask ourselves, “How did we get so lucky?” We took the longer, bumpier road to get to where we are today, but I know it is all just a part of who Colby is.