Tuesday, November 15, 2011

Top Ten Tuesday

In honor of November being Prematurity Awareness Month and also World Prematurity Day on November 17th I thought I would do a top 10 about things you may not know about preemies.

1.  Did you know that over 13 million premature babies are born every year world wide?  That is a lot of preemies who have to spend time in the Neonatal Intensive Care Units.  (info from here)

2. Did you know that one of the greatest minds in history, Albert Einstein was born preterm?  How about Stevie Wonder or Mark Twain!?  Yup, they were preemies too.

3.  Did you know that average cost of having your preemie in the NICU is roughly $15,100? And that is before medicine, doctors, specialist and machines that your preemie might need which could dramatically increase these costs.  Prematurity accounts for 47% of all costs related to infants.  (info from here)  That is over half!

4. Did you know preterm infants that have skin to skin connection with their parents gain weight faster, cry less, have a more stabilized body temperature, sleep better, breathe better, are often more alert, and have more stable heart rates?  Preemies need to be touched and connect with their parents.  Usually this is done through Kangaroo care and is so important to preemies and parents.

5.  Did you know that a simple bad cold in a full term baby could be life threatening for a preemie?  Preemies have lower immunity and need to be protected the first two years of their lives from the common cold and germs. That is why hand washing, keeping preemies home and out of large public places are so important.

6. Did you know that preemies are not just tiny little babies, they also are little fighters that have to overcome  many health concerns?  The range of health concerns is quite large and can range from short term problems such as breathing, heart problems and eye functions to larger long term problems such as cerebral palsy, hearing and visual impairments and developmental concerns. Each preemie has his or her own health concerns and what might happen to one 24 weeker isn't always the same for another 24 weeker.

7.  Did you know a preemie could be  less than one pound or as big as 9 pounds?  Premature babies fall in the range of 24 weeks to 36 weeks.  Their sizes, weights, needs and health conerns can all be very different.

8.  Did you know that most babies who spend time in the NICU do eventually come home?  Some babies spend a few hours, some a few days, and some spend many months in the NICU.  Thankfully, with modern technology, much research and experienced doctors, many premature babies get to leave the NICU with their parents.

9. Did you know that even though a preemie might have tubes, wires and vents all connected to them, they do know that their parents are there?  Preemies can sense, smell and hear their parents.  It is important for them to have their parents read books to them, to hear their parents talk to them, and to have their parents close.

10. Did you know that preemies are celebrated in November and especially on November 17th?  What a wonderful way to help others understand and learn more about preemies.  Wear your purple this Thursday for Preemies!

Monday, November 14, 2011

Just Vote

We are so excited to be up for KARE 11 and their $11,000 Charity Vote. The local non-profit with the most votes will receive an $11,000 grant from the Gannett Foundation and KARE 11! Voting ends at 11:59 p.m. on Wednesday, November 16, 2011.  So please check out KARE 11's facebook page and vote!

Share in the giving

Also on Friday 11/11 we were the lucky winner of $1,100 also from KARE 11.  Check out their website to see other nonprofits that won $1,100 too.

Don't forget we are still up for the Pepsi Refresh Project Grant too.  Voting goes until 11/30 so keep voting.  You can vote via facebook, text  (Text 109357 to Pepsi 73774) and your email----or all three ways!  Each vote helps!  We need to be number 15 or lower so please share with your friends and help us win $10,000 to continue to help families and babies.

So many easy ways to help Ella's Halo and it only takes a few minutes to vote!  Help us, help babies!

Tuesday, November 8, 2011

Halo Happenings (November Edition)

Welcome back to Halo Happenings. November is definitely starting off to be a crazy month.  We have lots going on (as always) around here.

As I am sure you have seen in emails or on facebook, but Ella's Halo is up for $10K Pepsi Refresh Grant.  It would be so awesome to win this so we can continue to help families in the NICU.  Here are a couple of easy ways to get your votes in now before November 30th.  Remember you can vote everyday so go and VOTE.

3 Steps to Voting Online:
1. Follow this link: http://www.refresheverything.com/ellashalo
2. Login or sign up (to sign up it just takes a minute). You can even login with your Facebook account.
3. VOTE and make sure to come back everyday after and continue voting.
2 Steps to Text Vote:
1. Grab your phone and text Pepsi at the number 73774
2. Put 109357 into your message and text again the next day

We are also doing our babies and book drive.  Join us now and during the holiday season by collecting new or gently used books for families in the NICUs.  We are looking forward to the  Minnesota Paralegal Association  and their Fall Gathering on November 17th.  We will have a table, will be collecting books and talking about Ella's Halo at this event and are super excited. So remember to grab some books when you are out shopping this holiday season. 

We are also looking for supporters to email KARE 11 at share@kare11.com to nominate Ella's Halo.  KARE 11 is celebrating 11/11/11 by recognizing local non-profits that give back to our community. Simply write a paragraph (no more than 111 words) telling them about your favorite local non-profit (Ella's Halo of course) and the difference they make for the community.   Please submit these by November 9th at 8:00 am (tomorrow morning).    Twenty-two entries will be randomly selected and announced on 11-11-11. So please send an email for Ella's Halo!

We are excited to host a volunteer event for Ella's Halo.  We are hosting a welcome bag making party which will all then be donated to area NICUs.  It will be a good way to get our volunteers together, enjoy some appetizers and cocktails, and help give back to our community.  Details about our first volunteer Helping Hour will be coming out later this month.  So check back soon!

And finally, did you know the November is Prematurity Awareness Month.  Premature birth is something that can happen to anyone!  Did you know that premature birth is the leading cause of newborn deaths world wide and that prematurity has risen by 30% since 1981.  It is a cause for concern and November is a month where we can bring awareness to these issues.  The March of Dimes provides so much information and statistics on premature babies.  And November 17 is World Prematurity Day when we all come together and focus on the issues of premature births.   

Check out next week when I pay tribute to Prematurity Awareness Month in my Tuesday Top Ten blog post. 

November is already off to a fun month.  So much to look forward to, great ways and ideas of giving back this holiday season, and we can't forget Thanksgiving and all that we are thankful for. 

Thursday, November 3, 2011


We are so excited to be up for the Pepsi Refresh Project $10K Grant.  It would be so amazing to win this grant so that we can continue to support babies and families in the NICU.  Just think $10,000 would help us support 3 NICUs in the Twin Cities for 2 years!  We would be helping so many families by providing over 1,000 bags. 

It is sooooooo simple and only takes just a few seconds in your day to vote.  There are two ways to vote.  Online or Text (or both)!

3 Steps to Voting Online:
1. Follow this link: http://www.refresheverything.com/ellashalo
2. Login or sign up (to sign up it just takes a minute).  You can even login with your Facebook account. 
3. VOTE and make sure to come back everyday after and continue voting. 

2 Steps to Text Vote:
1. Grab your phone and text Pepsi at the number 73774
2. Put 109357 into your message and text again the next day

You can vote everyday! So go and VOTE!

Now that you voted, help us spread the word too.  It only takes a minute to pass along.

Here are some helpful tips:
1. Send an email to your friends and tell them to vote at http://www.refresheverything.com/ellashalo
2. Link up to our event on Facebook and share with your online friends

 If we get enough votes from our supporters to stay in the top 15 projects in our category we will get a $10,000 grant!!

What perfect time to be up for this Pepsi Refresh Grant.  You have the entire month of November to vote and November just happens to be Prematurity Awareness Month.  So go on and keep voting so we can keep helping little preemies!

Tuesday, November 1, 2011

November 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.

Our November Feature Family are very special to us.  They are friends that we didn't meet in the NICU but through our Support Group.  If you have been following our blog, you know that the friendships we made in the NICU and in our Support Group are so very important to us.  When we first met Molly and Zach, they did something very special, they held their very own blanket drive and donated them all to Ella's Halo.  I know Molly doesn't know this, but their kind gesture is something I will always remember and that touched us.  To know these two parents were wanting to help others during their first holiday without their little baby boy was just so special.  Their NICU experience may have been short, but it left a huge impact on them as they continue to give back to the NICU.

Dylan Quinn
Written by Molly Quinn
Former NICU Mommy

Our son Dylan was born on August 10th, 2009 at 29 weeks 1 day gestation. We were going along in our pregnancy with no problems until we were told at our 20 week ultrasound that he was sick with what is called Fetal Hydrops, we were shocked. Hydrops causes a baby to develop at a poor rate due to fluid filling the body in two or more cavities. The fluid is a result of and underlying problem, we never found out what this was. My husband Zach and I were heartbroken. Nobody really thinks something like this will ever happen to them.
Upon finding out that Dylan was sick they told us our chances of him surviving this was somewhere around less than 5%. The following weeks were filled with countless doctors visits and a lot of waiting. We were waiting to feel because we did not know what the outcome would be. Our doctors thought that our little boys heart would stop by 22 weeks because there was so much fluid throughout his entire body and at times I was essentially waiting for that to happen. At 22 weeks his heart was beating and he was still strong. Over the weeks he started to move more and grow a lot. We of course were so in love with this baby and thought "we are going to make it!“. At about 27 weeks they started to become very concerned with my health and feared I was developing mirror syndrome which would cause me to mirror Dylan’s’ fluid, and also be at risk for preeclampsia. At 28 weeks I had developed polyhydramnios, too much amniotic fluid, and they decided to do steroid shots to try and mature his lungs. They also offered to do a thoracentesis. This is a procedure where they use a needle draw to remove fluid from the baby’s lungs. We decided it was our best option to help save Dylan who had plural effusions (fluid in both chest cavities), ascites (fluid in the tummy), and skin edema (fluid under the skin). He was a very severe case. The main concern of Dylan’s survival was lung development due to the fluid preventing this from happening, so we scheduled the procedure to be done.

As we were getting closer to a possible delivery we went to meet with our neonatologist at the University of Minnesota Riverside NICU on the morning of August 10th. We really wanted to plan and be ready for Dylan’s visit to the NICU after he was born. Everything went great, we were even shown a hydrop baby in the NICU that was doing really well. Our doctor explained all of the machines and what they did, he also went over detailed information on what exactly would happen as soon as our baby was born. We left feeling happy and full of hope because of the staff making us feel so welcome and we knew they would love and care for our son when he arrived.

Immediately following our meeting we were scheduled for the thoracentesis. The doctors were able to drain almost all of the fluid off of Dylan's left side of his lung and a liter and 1/2 of amniotic fluid from me. It was quite painful and I had been contracting through the entire procedure. We were done and happy, they actually said let's do the other lung but take a break first. We were put in a recovery room to monitor his heart and his movements and I felt so great, I kept thinking that we were on the road to taking our boy home. Then my water broke, my heart broke, I knew this was not good.

They delivered Dylan by Cesarean at 4:58 pm. I was able to see his perfect face and kiss him before I handed him over to the NICU team. Dylan was in the NICU for almost an hour as they worked on him. The doctor called my husband Zach down to show him x-rays of Dylan's chest and show him all of his vitals on the machines, he was very sick. Dylan was trying so hard, yet his oxygen levels had now affected his health even more, and Zach and I knew it was time to let him go. I will never forget the sea of sad faces that received me as I was wheeled in. They handed Dylan to me and he was at peace, he took his last few breaths in my arms. He was there with Zach and I as we told him we loved him and kissed him.

Not all of the NICU stories end how the parents and staff would like them to. Although we only spent a short time in the NICU with our son, it is the only time we ever had with him. The doctors and nurses made sure it was something special, and what happened in the short time we had with Dylan was somewhat magical. We were able to baptize our perfect little angel and spend almost 3 hours with him after he went to heaven. We were able to have the time to stare at him and kiss him like any parent would. Our amazing nurse Michelle took many pictures and also allowed Zach to give him a bath and change his diaper. Michelle brought us many different outfits, allowed us to choose our favorite one, and dress him. These are the moments that every first time parent dreams of, and she knew exactly what we needed. She will never be forgotten, she holds such a special place in our hearts.

We just celebrated Dylan’s 2nd angel birthday. For the past two years we have gone to the NICU on this day. We love to bring the staff flowers and say hello. We have also chosen to donate books, clothes, and other items that will allow the current NICU families and their babies to feel more at home. We continually want to let the staff know how much they impacted our lives. As parents that had only hours with our son, we feel lucky to say it was such a positive and memorable experience. This is because of what these nurses and doctors do each and every single day. The true sincerity we felt from each person that day will never be forgotten, and we thank them for that.

Dylan touched so many people that day and throughout his journey, as his parents, we hope he is never forgotten. Our wish is that his story can inspire even a small amount of greatness in anyone reading it. He was a fighter and has changed our lives for the better. My husband and I look forward to telling his little brother Brody his story someday.

Thank you to the staff at the University of Minnesota Amplatz Children’s Hospital. A special thank you to Ella's Halo for all that you do, we are lucky to know you Taryn and Ryan. And lastly, thank you for allowing us to share our son Dylan’s story.

~ Molly Quinn (Dylan and Brody’s mommy)