Dominic Ellingson

Dominic Ellingson Dominic resting after surgery!   It was a rough night Dominic and Mama Dominic with his big brother Vincent Mama got to hold her Baby! Oh Happy Day! Easter Sunday...Dominic is back in Surgery...please pray! Dominic undergoes his 3rd surgery-April 7th PNICU after 3rd Surgery done on April 7th Dominic and Dad Reunited and it feels so good:)

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Dominic is our 10 month old son who will be undergoing spinal surgery on March 31st.

Hello all! My name is Amy and I am 36 years old. My husband Robert and I have been married for almost 11 years and we have two fabulous little boys! Vincent is 5 years old and our youngest son’s name is Dominic. Dominic was born prematurely at 36 weeks gestation on May 5th, 2014. He weighed 5 lbs. 5 ozs (5 may be his lucky number!)and he is just beautiful! He was immediately taken to a warming table to be checked over by a pediatrician because he was so early. We quickly discovered that there was something wrong. Dominic had a large lump on his back and a skin tag attached to it. The doctor took action swiftly and ordered an ultrasound. Dominic had the ultrasound at 4 hours old and the doctor met with us about 4 hours after that to give us the findings...he had a tethered spinal cord. Dominic would need to undergo an MRI at Children’s Hospital of Wisconsin to get an in depth look at the cord to see what needed to be done.

Dominic was 12 weeks old when he had his MRI and the findings were not encouraging...he has a rare birth defect called lipomyelomeningocele (pronounced li-po-my-lo-men-in-go-seal), which is a form of spina bifida. He has a fatty mass of tissue on his back that goes through his spinal cord, tethering it in place. Your spinal cord moves freely and can "float". Dominic’s cannot. The condition is extremely rare and there is no known cause, but Dominic’s neurosurgeon explained things to us and has been instrumental in getting us in the right direction.

The mass is located in his sacral spine, which is at the bottom of the cord. The nerves in the sacral spine generally do not control motor function, but control bowel and bladder function.

The next step was for Dominic to undergo a kidney ultrasound, bladder xray, and urodynamic testing. All of these tests involved catheters being put in, taken out, put back was torture on us, but for the most part, Dominic took it like a champ!

The results were not what we wanted to hear. His bladder is malfunctioning and left untreated, would cause multiple problems down the road with his kidneys and other organs. We knew then what the doctors were going to say...spinal surgery. We took some time to think about it, got a second opinion (just to be 100% sure) and scheduled the surgery. It will take place on March 31st, 2015.

What the neurosurgeons will do is try to debulk the mass as much as possible and try to untether his spinal cord from the mass. There are no guarantees. There is no way of knowing the extent of the issues and how many nerves are involved until he is in surgery. Dominic will be "hooked up" to several electrodes all over his little body to calculate where the nerves are and detect if the surgeons are getting too close to them.

Dominic will be the hospital for about a week, as long as everything goes well. He will be under sedation for the first 2-3 days to keep him still so his spinal fluid can flow where it needs to and make sure there is no leakage. The recovery is actually the hardest part...his wound care will be difficult, as he is a baby with diapers covering his incision. I will be off of work for 5-6 weeks to care for Dominic after surgery. My husband is a stay-at-home Dad, so we will have zero income during this time. That is why we are reaching out to our friends, family, and community for help. Your generosity, love, and prayers are more valuable to us than anything. I thank you for taking the time to read our story!

God bless you all!


100% of $4,000 GOAL

Fundraiser Ended On: May 29, 2015 Midnight (CST)

Fundraising Team

This fundraiser is for:
Dominic Ellingson

Amy Ellingson
Team Captain

Fundraising Team

Sue Pruss
Team Member

Mary Maertz
Team Member

Diane Chandler
Team Member


May 12, 2015 - Home and Happier!

Hello, Grandma Diane here. I wanted to give you all an update since Dominic has been home. Initially, he was released from Children’s Hospital on Monday, May 4th. He spent his 1st birthday (Tuesday, May 5th) at home and due to a few complications, he went back to Children’s on Wed., May 6th. They kept him overnight for observation, and he was released again on Thursday, May 7th. He has been at home since then. There is a traveling home nurse who stops in as needed. All in all, Dominic is doing pretty good:) Amy and Bob have a lot to deal with for his medical needs, as he still has a PICC line and a feeding tube for medication purposes. 17 more days and he will be done with all of that! He is eating and drinking well, which is a great relief. Vincent stayed with his Auntie Julie while Dom was in the hospital, and he went home on Sat., May 9th. Everyone was happy to finally be reunited! On Mother’s Day, Julie and Dustin, myself and Hilary and Lindsay took a day trip to Appleton to celebrate Dominic’s birthday and Mother’s day. We went to Chuck E. Cheese and a good time was had by all. A big Thank You to all of you for your continued thoughts and prayers, love and support:)

May 2, 2015 - Movin’ on Up (Again)!

Friday, May 1st...Day 32... Today has been a great day! WE HAVE MOVED ON UP! We are out of the PICU and are now on the hospital floor! It is nice to have a different set of walls to look at! We also have a lot more freedom to roam about the hospital. It takes a little bit of work to get Dom unhooked from all of his lines, but the look on his face when he sees regular PEOPLE and other KIDDOS, it’s just priceless :) We have a nifty little stroller to tull him around in and it’s fun! THE BIG NEWS...if everything looks good on his MRI on Monday, WE GET TO GO HOME!! We have a lot of ducks to get in a row and training sessions we have to take, but hopefully it will happen over the weekend so we can be home for the big 1st birthday on Tuesday :) Dominic will go home with his PICC line to receive his antibiotics. He will also have his feeding tube for his nutrition needs (as he still will not drink) and to receive his withdrawal meds (as he will not take them by mouth). Yes, he is ultra high maintenance! But, we are committed to getting our little Dude back on his chubby little feet :) -Love and Hugs to all- I’ll keep you posted :)

April 29, 2015 - The Road is still long...

Wed. April 29th...Day 30... The last two days have been trying...Dominic had his feeding tube taken out yesterday to try to stimulate him wanting to drink. Unfortunately, it didn’t work :( He had to have it put back in today :( He needs to have good nutrition so his body and wounds can heal. He also was not taking his withdrawal medications by mouth either, so his withdrawal the last 48 hours has been terrible. Last night and today, Dom was shrieking and screaming when we tried to lay him flat in his bed and for diaper changes. He is grabbing and scratching his little head instantly when we start to lay him down. This made us all nervous, so the Neuro team sent him for another "quick scan" MRI. That is just a shortened MRI with no sedation so they can check pressure and fluid levels in his brain. The news from the scan was very good! This scan looks even better than the one he had on Monday :) He also had labs drawn and those came back looking perfect as well! The consensus is that he probably has a headache from all he has been through and it gets worse when he lays flat. Headache is also another withdrawal symptom. Dom also has had very bad anxiety and has only been comfortable snuggled in Mama or Daddy’s arms. He was pretty comfy in Grandma Cindys arms tonight too :) The road is still long and rough times are inevitably ahead, but we will continue to be our son’s #1 advocates! We will not give up, we will not give in. With all of your continued love and support, we will be home soon :) Love and hugs to all! I’ll keep you posted...

April 26, 2015 - What A Lovely Weekend!

Sunday, April 26...Day 27... We had a very busy weekend! Our visit with Vincent yesterday and today was just fantastic! We had so much fun :) We hung out at the hospital with Dommy and played lots of fun stuff at RMDH. Vincent, Bob, and Grandpa Bob went to the Harley Musuem this morning and got to check out tons of cool stuff! Vince was very happy to see his baby bro and knows that he is gonna be ok :) It was so wonderful to snuggle in bed with my boy last night! Today, Grandma Mary, Papa Dan, and Uncle Corey came to visit! They brought with them a wonderful lunch made by Mary’s good friend Patti and it was delicious and much appreciated :) We also got to visit with our best friends, The Hoffs, who brought the boys toys and chocolates! (Ok, I ate the chocolate :) It felt so great to be surrounded by so much LOVE all weekend 😍 Tomorrow is a big day...Dominic has his big MRI in the morning and it is the scan that everything from here on out is hinging on. We will know, basically, where we go from here. Our hope is that we will be home by Doms birthday, which is in 8 days. It is wishful, but it could be reality....please keep us in your thoughts and prayers! Much love to all and I’ll keep you posted :)

April 22, 2015 - We Are (Hopefully) on the Uphill Swing!

Wednesday, April 23...Dominic’s MRI yesterday looked good! His surgeon said he still has a little swelling on the left side of his brain, but that is to be expected, as that is the side he had surgery on. We will see how the week goes and he will have another one on either Friday or Monday. Dom is having troubles with withdrawal because he has been on so many meds for so long :/ But the doctors tell me the behaviors he is having are not out of the norm. Physical therapy will be coming by today to start working with Dom! He is weak and needs the extra help. They will be bringing a special chair for him to sit in to build strength. Im sure he will be thrilled, as he has been laying down for almost a month! We did have quite a bit of snuggle time yesterday, which is theraputic for both of us :) Dr Foy (Doms surgeon) said that Dominic is making such good strides in the right direction that he wants to hold off on the hyperbaric treatments right now. There is not a lot of data with hyperbaric treatments in babies, and while he does believe they are beneficial, there are also risks that, at this point, may be not worth it. Oh, my Vincent! I miss him so very much! But he got to go to school yesterday! We asked the Whitehall school district (where he is at with my sister) if they would allow a "guest student" this week and they said "Absolutely"! So he will go the rest of this week and possibly next week, depending how much longer we are here. I’m so very happy for him :) He has missed going to school a whooooole bunch. Love to you all, and I’ll keep you posted :)

April 19, 2015 - Sunday, April 19th 2015

Per Dominic’s Mom Amy... April 19th, Day 20...This is the post I’ve been waiting to write...we have had a GREAT DAY!! Dominic had a wonderful night last night and slept well. His surgeon, Dr. Foy, was concerned on Friday that he may have to have a 6th surgery to get his wound on his back to heal better. When he did his brain surgery Friday night, he also did a little work on his back wound. He then called in the plastic surgery team, who are experts in wound healing, to get their opinion. They came in today to check Dom out and we were all amazed...they took the dressing back and the incision looks AMAZING! The plastic surgery team does NOT think he needs another surgery and the work Foy did on Friday was the trick smile emoticon Dominic had another MRI yesterday and everything looks great! Dr. Foy got all of the fluid out and no more has pooled anywhere. He will have another MRI on Tuesday or Wednesday just to be safe smile emoticon Dommy Boy is also being weaned off of his ventilator and should be extibated by 5 o’clock this afternoon! We are still not out of the woods, but it seems we could be on our way... Thank you all for your continued thoughts and prayers...I don’t know where we’d be without your kind words to lift us up! As always, I’ll keep you posted!

April 12, 2015 - April 12th, 2015

Sunday April 12: Dominic had an alright day today. He did make a trip to Radiology this morning because of his magical little skills...he somehow flipped his PICC line around to face the wrong direction! So we have a new PICC line and his feeding tube was deepened for better feeds. Yesterday, Dom had his 4th surgery. He had a pocket of infection in his wound, so it was re-opened and cleaned out. The good news...NO SPINAL FLUID LEAKS! Thank you Lord! This means he is healing (albeit slowly) but healing is what we need! He remains paralyzed, heavily sedated, EVD drain in his pretty little head, fresh wound stiching, feeding tube...all in the name of HEALING. The plan is still to start the weaning process on Tuesday or Wednesday. It’s going to be a long, grueling week. But, it’s that much closer to my baby being better and our family back together again :) All in all, it’s been a good day today! Had a lovely visit with our great friends, the Hoff’s, my cousin Kerry brought cinnamon rolls and milk for breakfast,and we were treated to supper from Firehouse Subs from Bobs dad and stepmom :) Bobs mom Mary stayed with us all weekend, his sister Becky will be here tomorrow to stay until Wednesday morning, and then my sister Julie will take over guard duty from Wednesday on. A HUGE THANK YOU to the amazing support system we have! We are so very blessed to have so many wonderful people loving us :) And to the doctors and nurses here at are the most dedicated, hardest working, caring people I have had the pleasure of meeting 😊 Thank you so much to everyone for your support, thoughts, and prayers! We love you all....The Ellingsons

April 11, 2015 - Headed for Surgery #4

The road has been rough and continues to get rougher. Since April 7th, Dominic has been under heavy sedation, intibated, extreme doses of three different antibiotics, and has a EVD drain in his head. On April 9th, he started on a paralytic drug to keep him from moving (he is an extremely wiggly dude).Unfortunately, he is still leaking spinal fluid from his wound. The fluid looks to be infected, which is earning us another trip to the operating room. The surgeons will open the wound one more time and flush out the infected looking area.....We are staying very guarded in our optimism because the letdowns in the last two weeks have been hard to bear.....please continue to keep our family in your thoughts and prayers....We love you all and we will keep you posted.....The Ellingson’s

April 8, 2015 - April 8th - Post surgery (3rd surgery) Report

Per Grandma Maertz, "Dominic and Grandma Mary Peterson Maertz had a good night. The EVD is doing it’s job. Dr was in this morning and removed the dressing. Thought it was looking good. Will be sedated through the rest of the week. No fever either. Thanks for all your prayers and please continue we still have an up hill climb.

April 7, 2015 - Another set back - 3rd surgery today!

Please continue to keep Dominic in your prayers. I was informed earlier this morning that the doctors have detected yet another spinal fluid leak and little Dominic is back in surgery yet again. This is his 3rd surgery! Will update as I learn more....

April 6, 2015 - April 6th, 2015

Here’s the latest update from Amy....little Dominic’s Mom. "We have had a pretty good day! Dominic has been resting comfortably today and just generally LOOKS so much better than he has in the last week. He is on several different antibiotics, sedation meds, and pain killers, but he’s rockin’ it! Dom will be sedated this time for 4-5 days and kept flat. They want to make sure he’s good and healing well before he gets up and about. Because of this, he will have a feeding tube inserted sometime this afternoon or tomorrow morning so he can get the nutrition he needs and can get his belly full. I can’t stand it, but it’s what’s best for him, poor little dude is starving unsure emoticon Thank you for all the support and prayers, Friends! We love you all P.S. Please say a prayer for our little Vincent We are all missing each other terribly."

April 5, 2015 - Set Back for Dominic....Prayers needed!

Easter Sunday, a day of new beginnings and new life but for little Dominic and his family it’s a difficult and challenging day. This morning his temperature spiked and his wound starting weeping which resulted in the need for a second surgery today as he has a spinal fluid leak. This little man and his family needs your continued prayers and support. His stay will be extended at the hospital and he is back in NICU. We will share more later...but prayer IS powerful and right now little Dominic and his family need your continued support, love and prayers. God bless each and everyone of you! Much love and prayers....Great Aunt Sue

April 4, 2015 - Movin’ on Up!

We were moved out of the ICU on Friday! We are not out of the woods yet, as Dominic has a stomach virus that is causing him to have diaherria every 1/2 hour or so :( This is making his wound care extra difficult, but he is taking everything like a champ! AND, I also got to hold my sweet boy for the first time since Tuesday :) Thank you all so much for the continued prayers and support! We love you all....The Ellingsons

April 1, 2015 - Surgery done....

Just a quick note that Dominic’s surgery is over. Per MOM...."Had a so-so night. Dominic is not the most comfortable, which breaks Mama’s heart! But he did get to have some milk! Made him happy for a few minutes at least. " We will update with more details later but wanted to THANK everyone for the continued prayers and support. Please keep praying for a quick and full recovery.

March 28, 2015 - Let the PACKING begin!

Well, the time has come to pack for the big day. The "pack rat" in me is trying very hard to keep this in perspective! We have never traveled from home for this amount of time, so I am trying my best to NOT pack everything our boys own! Big brother Vincent will be staying with his Auntie Julie while we are in Milwaukee, so that means two sets of luggage...Thank you all again for your love and support. I don’t know where we would be without all of you :) Love to all, and I’ll keep you posted on our travels!

March 23, 2015 - Early Easter!

We had an early Easter celebration on Sunday at Grandma Mary and Papa Dan’s house (Bob’s mom and Dad)! We will be in the hospital for Dominic’s 1st Easter, so everyone wanted to get together and enjoy some family time before hand. We all had lots of fun with a wonderful dinner, Easter Egg Hunt, and tons of candy :)Such a lovely day!

March 14, 2015 - Spring Has Sprung!

We have been outside all week long here at the Ellingson household! The weather has been just gorgeous! Mr. Dominic has been having a blast going for walks, watching his crazy brother run around, and breathing in all of the fresh air :) We just wanted to take a moment to say THANK YOU to all of the wonderful people that have donated to us. Your generosity and kind words mean more than we can say! We are two weeks away from surgery. I’ll check in again soon to tell you the fun things we’ve done before the big day! -Much Love to All- -The Ellingson’s

Supporter Activity

April 27, 2015 - Anonymous
So happy to see such improvement! We will continue to keep Dom and your family in our prayers

April 27, 2015 - Anonymous

April 25, 2015 - Anonymous
Thank the Good Lord for hearing all the prayers for little Dominic. He is a gift from God. So thankful he is finally on the road to recovery and able to be re-united with his family.

April 20, 2015 - Friends of Doc and Cindy!
Thoughts and prayers of healing for little Dominic. Also for your family. We have a 26wk preemie in our home. We understand how hard hospital life can be as we spent 3 months at St Joes NICU. Good news is Marcella is now 7 1/2 and just lost her two front teeth! Healthy and happy and Blessed! I wish we could do more via meal trains or babysitting help for your son. We have three girls and they love playdates! Lots of love, Paul, Yolanda, Mercedes, Marcella and MariAna

April 20, 2015 - Anonymous
Dom continues to be on our prayer List. Stay Strong!

April 16, 2015 - Judy Quinlan
Amy & Bob, I’m so sorry you all are going through this, but we are all thinking about you, and following Dominic’s progress.

April 16, 2015 - Dski family

April 15, 2015 - Gail Lenz, Carolyn Haidvogl, Jody Youngbauer, Sandy Abraham
Our thoughts and prayers are with all of you for a complete healing for Dominic.

April 10, 2015 - Rick and Linda Reinke
Prayers to the entire family ~ God bless.

April 10, 2015 - Barbara Rhode
God’s blessings to you all!

April 9, 2015 - Richard and Peggy Olah
Your family is in our thoughts and prayers. (Brother-in-law and sister-in-law to Tim Maertz.)

April 9, 2015 - Susie Hilgers

April 8, 2015 - Terri Thiele
Prayers and best wishes to you and your family.

April 8, 2015 - Steve & Kelly Siciliano
Dominick is in our prayers.God Bless this little fighter.

April 7, 2015 - Cady & Oliver Pugh
Your family is in our prayers!

April 7, 2015 - Anonymous
God Bless your family! You are all in our prayers.

April 6, 2015 - Anonymous
Praying for all the family. Dominic is beautiful.

April 5, 2015 - Nick Domino

March 31, 2015 - Emily Ferries
your family is in my thoughts and prayers!

March 31, 2015 - Andy & Teresa Smrekar
Sending all our happy and hopeful thoughts your way...everything will be fine. Love to you all.

March 31, 2015 - Meg and Alice

March 30, 2015 - Mike & Kim Jacobi & Family
Amy & Bob, We will be praying for Dominic and your family.

March 30, 2015 - Joe & Jane Leto
Thoughts and prayers with you and your family.

March 30, 2015 - Anonymous
Praying for you!

March 29, 2015 - Jeff, Shari, Alex, and, Heather

March 27, 2015 - doug and Mary lewandowski
Prayers are with you all

March 23, 2015 - Michael & Suan Moore
Our prayers are with you & your family.

March 23, 2015 - Michael & Suan Moore
Our prayers are with you & your family.

March 17, 2015 - Jeff&Roni Parnell

March 15, 2015 - Dominic’s loving Aunt, Uncle, and Cousins
Thinking of you! Wishing you a quick recovery.

March 15, 2015 - Stephanie Feld
Get well soon!!!

March 14, 2015 - Michele Beck
Dominic I promise to be pray for you from this day forward. Tell mommy & daddy I will be praying for them as well. I know this is a difficult surgery to go through. I will ask God to guide the doctors able hands and make sure they do all this is possible to release your spine and allow you to be restored to full health. I also pray, as a grandma, I know all about stinky and messy diapers. So I understand the difficult task before your parents. I pray that all your stink stays below the surgical line and keeps you sanitary. I pray that no infection shall happen. I pray that only healing and restoration shall take place. I thank God you are too young to retain the memory of this. I ask God to help your parents who will always remember this. I am praying for a whole lot concerning you. You are covered in prayer. God bless you and I can’t wait to hear the good news of your recovery

March 14, 2015 - Anonymous

March 14, 2015 - Uncle Norm and Cheryl Ellingson
Our thoughts and prayers will be with you during this trial. Dominic looks like a fighter!

March 13, 2015 - Angela Degand
I am so sorry that you are all going through this. I am sending prayers that all goes well and he has a quick recovery. Thinking of you all and sending love!

March 13, 2015 - Karin and Dre

March 13, 2015 - Race
Family of Coreys is family of mine. :) My thoughts are with your family.

March 12, 2015 - Christian at DealerFire

March 12, 2015 - Uncle Corey
Thinking of you!

March 12, 2015 - Michelle DiMaio
Praying for Dominic that he may have a successful surgery and speedy recovery.

March 12, 2015 - Amber Miller & Family

March 12, 2015 - Grandpa Cook

March 12, 2015 - Aunt Julie & Uncle Rob
We’re keeping you all in our thoughts and prayers! Lots of love sent your way💕

March 12, 2015 - Anonymous
Hugs and kisses to you guys. We love you all.

March 11, 2015 - Anonymous
Always keeping Dominic in my thoughts and prayers!

March 10, 2015 - Grammy Diane and Papa Jeff
Grammy and Papa love you very much, Dominic. We know you will do great with your surgery and be good as new:)

March 9, 2015 - Anonymous

March 7, 2015 - Sue Pruss
I’ll be praying for little Dominic!

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