I was a student at jills school in karlstad, mn. I went there for a long time and knew jill pretty well. I also have a child now 11 that has had 3 heart surgeries since birth. His condition was named tetrology of fallot. He was diagnosed by his pediadric cardiologist, Dr.Hagler at Mayo Clinic. I understand the diffuculty trying to make something out of nothing. His first surgery was at 8 mos, again at age 5 and at age 10.More to come and never sure what the next outcome will take me to. I just hope and pray that his next surgery,he wont need a transplant. Its a hard thing to go through, especially alone, like me. When you child goes under the knife,you could only pray things go well . I always say, ” Hope for the worst and pray for the best.” Its really hard to see your child in pain and never want to see them suffer. His condition is still a mystery, to all of us, it isnt hereditary, and wasnt really explained why he was born with this. I m not sure about your finances, I was able to recieve SSI for my son 2 times. You might qualify to get it for her if you havent tried, everything helps when you need it. My condolences go out to your family. I feel for all the parents dealing with these types of conditions, as they are very painful and dreadful to deal with. My sisters will never understand the pain I go through every time my son has a surgery, and will never understand my personal feeling on this subject. Their children were born healthy. Take care of your beautiful little girl, and keep praying for her, there is a god and guardian angels out there, I promise you. An angel has protected my son every time, and so will one, for yours. I’ll Pray for your daughter as I pray for my son, they are precious souls, and deserve something out of life. To live. God Bless your family and the best hopes for the future.
Comment by Joey Larson on October 2, 2009 11:52 PM
Dearest ones we are praying for you..Just remember out of all this we have testimony for when those families come into our church with their special needs which only a few can touch and understand……You are so strong.. Jesus we ask for a quick healing so they can return home..we ask for the air of the purest measure to start flowing through her lungs..we ask for the angels to come down and give strength to you both. Jesus we trust in you and we know that YOU LOVE THEM…Jesus bring them home quickly to those who love them most are waiting..Praise you name
Comment by Christine Newville on October 2, 2009 9:42 PM
We are praying are a speedy recovery. Please let us know if you need anything while you are in Rochester or at home. Matt and I are both home till monday pleaselet us know if we can do anything. I could even come and play with Solvej if you need me to. GOD BLESS
Comment by Steve Jewett on September 27, 2009 6:21 AM
Hello Etta and family!
Such great news that you are all safely home. I will share the news with Helen and our entire congregation today at our celebration of worship. God’s continued blessing on your family.
Welcome home to all of you. I am sure your beds felt wonderful. You are truly and amazing young lady who has captured the hearts and love of so many people. Continue to heal and be yourself (a happy go lucky two year old). We will continue to pray for you and thnik of you always.
So happy to hear Etta is doing well. I’ve been following along with the progress and praying along the way. She is a blessed little girl!! God has big plans for her!! Hope you two are getting some rest, it’s exhausting I’m sure. Love you all Great Aunt Carla
Comment by Joey Larson on September 20, 2009 8:57 PM
Hello dear ones, Now i know how to let you know that I am praying and waiting for you to come home. I want you to know I am so happy that you are doing okay. If you need help this weekend please let me know.What do you need money footd prayer that is obvous:) love you so much guys and Etta
You are a trooper and a ray of light
Love ya The Larson’s
Matt, Joey, Christian and Jaedon
Comment by steve jewett on September 18, 2009 7:51 PM
Hello Etta and family,
I shared the great news of being moved from ICU with Helen this evening. We are all excited and humbled by the healing power granted to children by our loving God. We at New Horizons are also lifting up for blessing all of the skilled and dedicated souls that caring for Etta and her family. All of you are continually in our prayers.
Comment by Etta's WI FAN CLUB on September 16, 2009 1:44 PM
hello sweetie….
Oh, our little Ettabun…we cannot wait to hear that you are up and about…you are a brave and strong little lady…we pray your pain subsides and you are up and at it in no time.
We love you!!!
Comment by Steve Jewett on September 15, 2009 7:04 PM
Hello Etta and family,
Thanks for the updates. I share them with Helen as soon as I read them. All of my “prayer warriors” are focusing on Etta’s recovery and the health and well being of your family.
Comment by Aunt Stacey Mr Frankie Cat on September 14, 2009 11:37 PM
Hey baby girl! Just wanted to tell you how proud of you I am and how much I miss your cute little nose. wish I could have stayed longer with you at the hospital, but Aunt Stacey has to work so she can buy Etta Bun more monsties! Love you so much and hope I get to see you soon! Love you!
Comment by Etta's WI FAN CLUB on September 14, 2009 10:29 AM
oh etta bun……
miss you much. praying for your strength and courage…
you’ve got a great bunch behind you…Daddy,Mommy, and Solvej love you very much!!!
be strong little one…
~~RLA
Comment by Etta's WI Fan CLUB on September 12, 2009 9:11 PM
oh…. Etta bun….
so, you’re website kicked me off…but I’m back!!!
You be a good girl….we’re all praying and thinking about you….
don’t touch your tubes…they help you….
Grandpa and Grandma Arias can’t wait to snuggle with their “little girl”….plus…Solvej keeps checking you out and can’t wait to play again soon.
Sleep tight sweet pea…..MUCH LOVE!!! and snuggles….
Comment by Steve Jewett on September 11, 2009 8:40 AM
Hello friends,
Great-grandma Helen just contacted me about Etta’s surgery. I immediately contacted my “prayer warriors” and now I am contacting you so that you will know that many around the world are praying for Etta and asking a blessing for all who will participate in her surgery and will be caring for her post-op. We will lift up all of you in our prayers in our Celebration of Worship this coming Suunday.
What a precious little one! Etta’s pictures made me smile. She looks like quite the character. I will be thinking of her and praying for Etta and her family.
My granddaughter, Olivia 1.5 years old, has HLHS.
It warms my heart to see Etta looking so happy and healthy.
Deb
Comment by Amber Nietert on March 28, 2009 3:32 AM
Hello! I went to high school with Etta’s Aunt Regan. She was kind enough to inform me about your daughter’s heart defect and share this webpage with me. You have a beautiful and amazing little girl! Our youngest son has Double Outlet Right Ventricle and Transpostion of the great arterties. He had the Bidirectional Glenn Procedure in December and the Fontan is next in a couple years. The resilience of these little kiddos is truly incredible!! We will continue to keep you and little Etta in our thoughts and prayers!
Amber Nietert
Brekin’s Carepage name: BrekinNietert
Comment by Etta's WI FAN CLUB on February 14, 2009 6:57 PM
Sending you our love on the “day of hearts”… we love you and are thankful for you and your parents and your sister and the amazing MD’s/surgeons/healthcare team whom helped your heart!!!
Comment by Etta's WI FAN CLUB on January 4, 2009 5:50 PM
OH ETTA!!!!
I was just reading back on your journal and the first year of your life…. you’re almost two (well 22 months to be exact).. you’re a big sister .. and you have a new puppy!!!
We need pics…. we need updates!!! I miss u everyday, you’re the cutest Thinkin of you daily… love to you always.
Just thinking of you and thought we would say “hi”. Hope all is going well and that you are enjoying this summer.. I know it is going by ever so quickly.
Stay cool and our best to all of you.
Comment by Etta's WI Fan Club on May 4, 2008 9:11 PM
Etta!! WHAT is up … we miss you and just wanted to check in and see what your latest tricks are!?!?! We hope that the weather gets nice so you can go and play outside!!
lovin’ and missin’ ya!!
Comment by Steve Jewett on March 18, 2008 11:30 PM
Dear Etta,
Happy First Birthday! We at New Horizons continue to pray for you and your entire family. I hope that you have a great birthday celebration and that your parents will post some birthday photos so that I will be able to share them with Helen and Harold.
Comment by Andi, Dan, and Malakai on March 17, 2008 4:05 AM
Hey you guys! Congratulations to Etta… you made it to the one year mark with flying colors! We’re so happy for all 3 of you and keep you in our prayers.
Looks like you were getting ready for surgery while I was in the hospital having our baby! Here’s the quick intro of Malakai Jevery Jaspersen, newest member of our household. He looks forward to meeting little Etta (maybe this summer when we visit?)
Comment by Damaris Pereda on March 2, 2008 5:15 AM
Just wanted to stop by to show some love to the fam. May you continue to find strength and support from God, and the community of people He has placed in your lives…
Can’t wait to see Etta runnin’ around like crazy as soon as she starts walking!!
Hi you guys. Thinking of you often. Hoping and praying that this spring brings a BIG ‘OL bunch of newness and healing to all of you. I’m still up for duties as a watcher whilst you paint any closets that need painting. Let me know and I will clear a day on my schedule. Love all three of you so much, Gena and the girls.
Comment by Sarah Scheffert on February 25, 2008 6:58 PM
Can’t get you guys out of my head. Hope you are settled back at home and that Etta is recovering beautifully. Praying that you get some time to be just a regular ol’ (healthy) family of three, with no “special” circumstances for awhile. “Boring” life is beautiful, no?
Thank you for sharing your story and Etta is lucky to have such wonderful parents supporting her through the process! I wish you all the best and you are in my thoughts.
Comment by Sarah Scheffert on February 21, 2008 2:06 AM
Jesse, Juana, and Etta,
Here I was, thinking of you guys and clicking on my old bookmark to see if you had your website up. I was so surprised and happy to see that it was! And then, roaming around, I discovered that sweet Etta has had another surgery! Wow, you guys.
Also, I was struck that she is almost a year old. Has it really been that long since I’ve seen that chubby little Ewok baby, with the sticky-upy hair??? I haven’t yet looked at all the pictures, but from the few I’ve seen…. *pitter patter* Seriously you guys. Wow. Beautiful.
So, my offer still stands- if you ever need a stopping place on your travels to/from Mayo, you are welcome here. Give me a 5 minute warning, and I’ll even have tea on. =) Here’s my info again: 800 3rd Ave SE (from Hwy 14, turn south on 8th st. and go 1 block. We are the big brick house on the left.) 507-835-4863
Lifting you up in prayers and thoughts and sending peace and healing your way…
I hope all is going well after Etta’s latest procedures. She has grown so big! It is great to see you feeling better too Jesse!! Quinn has been doing well, I just hope we can get through this flu and rsv season untouched…maybe we will see you again for the fontan, as were in at the same time for the glenn. God Bless your family – Becky and family – carepages.com ; page named Buckridge.
Comment by Steve Jewett on February 19, 2008 12:26 AM
Dear Jesse, Juana and Etta,
Thank you for the recent photos. I printed them and gave them to Helen and Harold. Every Sunday our congregation prays for your family and you are also in my daily prayers. I hope that all of your traveling has been safe and that you are looking forward to the promise of Spring. At New Horizons we are remodeling the vacant space next to us into our new sanctuary. On February 29th we will “Leap” into our new sacred space with a special service. Please keep us informed.
Comment by Etta's WI Fan Club on February 12, 2008 7:01 PM
Hey Mini Bun and Rents!!!
We loved the new pics…you are a rockstar baby!!! Looks like the Nurses and Dr. Burkhart are pretty proud of you!!
Let us know how you are doing!!! We love you lots.
Comment by Janet Gray on February 10, 2008 11:15 PM
Your Etta is beautiful!! I was just checking your website for news of Etta–she has been in my prayers daily and is good to see she is doing well. What a precious little one. I will forward the WCCO special report on her to Nathan & Katy as I am sure they would want to see it. Take care of that little one and will keep her in my prayers. Janet
Hi you guys,
Praying all went well today. You are not far from our thoughts. Praying that you sensed God’s big, warm, cuddly blanket around all three of you today as you walk out one more step of the journey. Lots of love from all us girls, Gena.
Comment by Andy Browne on February 7, 2008 11:03 PM
Etta, Jesse and Juana,
Etta I have prayed that todays surgery went well and that you are on your way to recovery. You are such a sweet and strong little 10 month old. I was very glad that I could stop by and see you yesterday.
Jesse and Juana thank you for letting us stop by unannounced yesterday. It was such a blessing to me to share some time with the three of you. I hope and pray that the grace and hope of God was with you last night and today. Let me know if there is anything that I can do. I’m praying for the three of you.
So glad we found you guys again. I had to laugh as people at work all came to tell me about this story on WCCO about a heart baby. Here it was you guys! You guys- she is BEAUTIFUL! Oh my, she takes my breath away. Praise God for that sweet one. I’ll keep her in my prayers for this new proceedure. I was wondering who her doctor in Mankato is? If you have down time in the PICU drop me an email…I’m thinking they may have the same doctor?
Comment by Ron & Wendy on February 7, 2008 5:16 AM
Jesse, Juana and Etta,
We’re keeping you in our prayers. God has kept you going and blessed all of you through every step. Amazing, huh? Looking forward to good news.
You are all in my thoughts and prayers. What a beautiful little girl God has given you! It is clear why God chose you as the parents of little Etta. You are doing a wonderful job seeing that this precious gift is cared for properly. Thank you for sharing Etta’s story as this is a perfect example of God’s healing power, love and faithfulness.
Dear Jesse and family, I spoke with you this evening from Barack Obama’s campaign headquarters in Wisconsin. You graciously shared your web site with me. I will keep beautiful Ella and all of you and her medical staff in my prayers. Tomorrow morning I will call the folk on my prayer chain at church so many more prayers will be lifted for you and yours. You have a precious gift and I know God will grace, protect and shine on her.
Comment by Etta's WI Fan Club on February 4, 2008 4:23 PM
Hey there sweet mini bun!!!
We are thinking of you and sending our thoughts and prayers your way…our advice…extra smiles, extra laughs, extra silliness!!! You’re truly amazing!!!
Thinking of you today and always!!!
As you prepare for your trip back to Rochester we wanted to send our best to all of you. You are all an inspiration to us.
Our prayers and thoughts are with you.
Comment by Steve Jewett on January 29, 2008 2:24 AM
Dear Jesse, Juana and Etta,
I just spoke with Helen and she gave me the WCCO web address for your video. Etta is beautiful in the photos and stunning in the video. Our blessings and prayers will continue to be with all of you as you prepare for the “tune-up” surgery.
as i read these other stories i realize once again how lucky i am that my son survived h.p.l.v. all those years ago……….amazing
thank you for reminding me……..peace
it is good to see the goodness of the Lord. Your trial is not to be taken lightly; I pray God will reveal more of Himself as you live day in and day out; and for your child, well, you KNOW God has big plans for her! Blessings to all three of you.
Let me know if I can do anything to help you guys out. Please feel free to call me if you need any site development done. Have you considered getting your own domain name? I will host it for you for free through my company.
Comment by Valentina (Colombia) on January 27, 2008 2:33 AM
hola familia, me algera ver a Etta, esta muy bonita, se ve muy bien al igual que Juanita y Jesse, espero que todos esten bien y estoy muy contenta que hayan hecho este documental sobre ella ya que esto fue una gran experiencia. los quiero mucho y estamos orando para que todo salga bien.
This is my first time at seeing the video, photos, newscast on WCCO as I’ve been laid up with knee surgery. It was a blessing to see you a happy baby, already trying to walk. I’ve been praying for you, Mom and Dad often. You are a special baby, a miracle baby. I know God will keep blessing you and using your life in the lives of many others. I’m glad I’m a part of your family.
Comment by Jessica and Terel on January 26, 2008 7:08 PM
Dear Jesse, Juana and Etta,
We watched the special on Etta on WCCO and were not only touched by what a sweet baby Etta seems to be, but also relieved to see her doing so well. We are pregnant with a little girl who has a similar condition: single atrium, AV valve, ventricle, double outlet RV and possible heterotaxia. We have noticed Dr. Singh’s name in the guest book several times and are thankful not only that is he on our case, but that you put up this site and guest book so that we could see Etta and the other wonderful children who have been through this. Our baby will go through the same type of surgery that Etta has and is going through and we cannot tell you how much it means to us to know that we are not alone. We want to wish you all the best with your beautiful daughter and we hope that you will keep up this site and continue to touch the many, many people who are reaching out in a time of need.
Thank you so much,
Comment by Mike Maciazka - Coon Rapids on January 26, 2008 3:18 AM
I wanted to say what a pretty little girl you have. It’s good to see a little one with HLHS that is doing well. On July 19, 2007 my wife and I had our first child (Abigail Rose)…she was born with HLHS and we were aware of the problem ahead of time and while being sad we had a positive outlook. When she was born however, they found a number of other problems and there was nothing they could do for her. We lost her early on the 20th. She was 21 hours old.
My wife is now pregnant with our second child and soon (Feb. 11th) we have the ultrasound to find out the sex. Hopefully they won’t find anything else as that was when they found out there were other problems.
I wish your little girl the best of luck with her final surgery and I am sure she’ll be just fine.
Dear Arias family,
I was forwarded your story and I was very touched to see your beautiful daughter’s story. My son is 2 1/2 and also has HLHS. With my son too, you would never know that there was anything wrong with him. It is so amazing what these wonderful doctors can do. Thank you for sharing your story with so many and helping to raise awareness for heart defects! May God bless your family! http://www.caringbridge.com/visit/bradygesin
Julie
Comment by Karen - Byron, MN on January 25, 2008 11:09 PM
Etta is so beautiful and has such a wonderful little personality. I saw the story on WCCO and will keep you all in my prayers looking onward to the next surgery.
A very good friend of ours from Iowa had a little boy whom is now a little angel in heaven and I am sure is looking over your little Etta and a wonderful outcome with that next surgery!
I work at the Mayo Clinic in Pediatrics and you could not have come to a better place! Bless you all.
My mom told me about your story that she watched on the news last night. I watched the video online. Etta is adorable and very sweet. My daughter Abby also has HLHS. She was diagnosed inutero, so we knew that she would need surgery before she was even born. She has had all three surgeries and was doing great until last year when she got very sick and ended up spending 5 months at Children’s Hospital. Her cardiologist is Dr. Singh from Children’s Heart Clinic. Abby was able to come home in July last year and is currently waiting for a heart transplant. She has three IVs that run continually and now we are just waiting. But she takes it all in stride and amazes us everyday. She also has two younger sisters. Clare who is 2.5 years and Eva who is almost 1. We know the ups and downs of HLHS. I hope that everything for Etta continues to go smoothly and that any bumps in the road are minor. We will pray that her next surgery goes well. Thanks for sharing your daughter and her story with us.
Sincerly, Heather Ostlie and family http://www.caringbridge.org/mn/abbyleigh
Comment by Grandpa & Grandma Ellerbroek on January 25, 2008 9:36 PM
Dear Jesse, Juana, & Etta,
Saw your video clip on WCCO’s website this morning. Etta, you were so sweet (as always)! We praise God for all he has done for all of you and look forward to all he will continue to do on your behalf. Jesse and Juana, you have been awesome parents. It’s so much fun to see wonderfully you care for and interact with Etta. We look forward to seeing you again – hopefully in the near future.
Love you! xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo
Mom/Grandma & Dad/Grandpa E.
Comment by Pastor Johnston on January 25, 2008 7:17 PM
Jesse & Juana, I lost touch with you after the first surgery, but remembered you before the Lord for Etta’s needs (and yours). I was happy to see you all on WCCO last evening and to realize it was Etta. What a beautiful “cutie.” Our prayers will continue for you all. God bless you abundantly!
my son , Eric, was born 17 1/2 years ago in Alexandria Minnesota with hypo plastic left syndrome. he was not properly diagnosed until he was near death, and i met a doctor who told me he was blue at 3 1/2 months old(thank you dr stewart, with all my heart). i brought him to the clinic several times per month prior to that, and was regarded with suspicion and asked things like ” do you change his diapers?” and “are you feeding him every day?” due to his low weight and constant diaper rash ( i remember every word of that dr odland and dr ???) we ended up at mpls childrens with dr singh (my hero)from the childrens heart clinic, and they told me that there was very little if any chance of survival, but that they would try. i was in shock. they said that Eric was their 5th baby with “hypo left” and that all but one had died, and the survivor had moved to Europe and outcome was unknown. amazingly, dr helseth, with his giant baseball glove sized hands (rest in peace, dr H) performed the damus-kaye-stanzel procedure. it worked!!!!
a few months later he had a bidirectional glenn shunt, and then a hancock pericardial patch.
eric is now 17 and is a brilliant, talented, headstrong, tall, handsome musician with a promising future ahead of him. for that i am forever grateful and i love to hear about other survivors of this recently conquered heart condition.
had eric died , i would have granted the doctors permission to use him to learn about h.l.v., just like erics uncle stevie, who died in 1971 of Helaine membrane disease. ( all 7 of the mckoy septuplets had h.m.d. and survived it, due to the generosity of people like my mother who can see thru their grief to a better tomorrow)
i guess i just wanted to share our experience with you and tell you that you are in good hands, and you are lucky to be born in a country where there is medical help available for people like you and i and our children. we would have lost our babies had they been born in certain other countries. Eric racked up a quarter million dollars in medical bills in his first few months. the children’s hospital gave me a free hotel room on site, free meals, even paid my gas money after he was released. i was totally taken care of, weeks and months at a time. how cool is that?
also, just in case i sound preachy, i saw you guys on tv and i can tell that you are my kind of people. you know, normal everyday people, who work, play , and live like everyone else .
i send you lots of good vibes and peace…..rhonni
What a wonderful story on WCCO. I didn’t see it, but was told by Dr Houlihan and checked the web site. Etta, you look just beautiful, seeing your pictures brings a smile to my face.
Bless you all and we’ll see you soon.
Hugs…
Terri
ISJ Cardiology
Comment by Cindy Birkeland on January 25, 2008 3:37 PM
Loved seeing you on channel 4 last night. I had seen promos all week and wondered if it wasn’t this little one! I LOVED how fascinated she seemed to be wtih Dennis Douda…cute, cute!
Comment by Cheryl Ryder on January 25, 2008 3:31 PM
I saw your story on WCCO last night and just wanted to stop by and say what a beautiful daugher you have! But of course you already know that ) I am glad things are going so well with Etta’s surgeries. My thoughts will be with you as you continue this journey.
I just wanted to contact you about the amazing technology they have these days about this heart diease. My son was born 19 years ago with the same heart defect. At that time our only option was to take him home and enjoy our time. We were fortunate we had two months with him which were over the holidays, which made them very special to my husband and I to be able to have a Christmas with our first child. We now have two beautiful, healthly sons, which we cherish with our whole beings. I am so glad they have made so many options for parents and children, so no one needs to hear the devasting news we did about a newborn child. Good Luck with future surguries and enjoy a long happy life with your daughter.
I saw the piece about Etta on WCCO and wanted to tell you what a strong and special family I think you are. Besides being beautiful, Etta is making a huge difference for so many other children by being a pioneer. The stress you have gone through is going to make it better for other families.
Though Etta’s heart may not look like ours, I have the feeling it is always going to “work” better than most.
What an adorable girl Etta is! She is blessed to have parents who are so involved in her care. I am thrilled that you are documenting her care and surgeries so that when she gets older and has questions, you will be able to provide her the answers. I can relate to what you are going through, with having a son born 13 years ago with Hypoplasic left heart syndrome, transposition of the great arteries and coractation of the aorta. the pictures you took of Etta with the plastic over her open chest brought back so many memories for me and what I went through with my son Shane. I made a scrapbook of Shane, all of his surgeries, pictures of him as he was healing and I think that helped me out alot…..seeing the progress and all. I also kept a daily diary. Health care has come a long way since 13 years ago. You are strong parents having to go through what you are with Etta. I wish you my best in your journies with Etta and her health care, and I will keep watching for updates on her. Be strong and Be patient is my advice to you. Keep up the good work!! Theresa
Etta, your so beautiful! I just read the article on WCCO, and I know exactly what your going through. I have faith that she will pull through this with a breeze. My son who is now 9 years old has only one ventricle. His diagnoses is Levo-transposition, VSD, single anatomic left ventricle, coarctation of the aorta. He isn’t defined as hypo-plastic left heart syndrome, but very simular. He has had 4 heart surgeries, 4 days old was the repair of the coarctation, 2 weeks old was the Glenn Shunt, 3 months old for the Damus Kaye Stanzel surgery, and 2 1/2 for the Extra-Cardiac Fontan. Before the Fontan surgery his 02’s were mid 60’s and now he is anywhere from 93 to 97. Which is awesome. I just wanted to share with you that you aren’t alone and now that you shared your story you’ll have so many people that will pray for your beautiful daughter Etta.
If you need to vent or just someone who has been through this and understands, your more then welcome to email me back and I will share my phone number with you. dbeverson@hotmail.com
May God be with Etta and your entire family and friends. I will pray for her and see that she is guided through her up coming surgery with loving angels.
Heather
Ramsey, MN
Comment by Tracy Erzar on January 25, 2008 6:19 AM
Jesse, Juana and Etta-
I wanted to let you know that you are always on my mind and in my prayers. I just happened to be watching tv and saw Etta during a commercial. It was a really nice suprise. She is so cute. Let me know if you need anything. Hope all is well, Tracy
Little Etta is a beautiful miracle! I will pray for her that she continues to be a healthly little girl and that her final surgery is a success.
I have a 12 year old nephew in Chicago who also has HLHS. I was there with my sister and brother-in-law when Willy had surgery #2 and #3. Thanks to the miracle of these 3 surgeries, Willy is a normal little boy today! We are truly blessed!
Saw your story on WCCO news tonight and wanted to send a note of encouragement. I too have congenital heart disease, although a different set of complications than Etta faces — but the newscast made it sound like she’ll be having a shunt put in sometime in the future, and I’ve got two of those (the Blalock-Taussig that apparently often go in conjunction with Norwood). Mine are obviously a little different from Etta’s — mine are over 23 years old, and I’ve lead an almost unbelievably normal life! So apparently they work! Good luck to you all!
Hello! I watch you on the news tonight and was soooo touched! I also have a son with Hypoplastic left heart. He is 7 1/2 years old and doing wonderful! Your little girl is so cute! All of the pictures and video that was on the news tonight is just the same as my son. We also have no idea that Tyler had anything wrong with him when he was born. I just thought I would send you a little note that they do grow just like any other kid, but with a special heart.
Heart Parents,
Becky and Spence http://www.caringbridge.org/mn/tylerschnacky
I just watched the piece on channel 4 on your daughter. What a doll she is and so happy. It was so cute to watch her watch Dennis Douda. We are so glad for you that her outcome has been so good and positive and she will grow to be a lovely adult.We know you’ve been through a lot as parents and hope you can find time for yourselves as well.
Blessings from a viewer.
Hello – I just watched the coverage of Etta’s condition on the news- and was amazed at the stress you have endured as parents and the great strength of your adorable little girl..just want to wish you continued good luck and let you know she is absolutely a doll so so cute!! She seems to be a pretty special little gal! Again wish you well!! Vonda Herding, Mankato MN
GOD bless you and GOD be with Etta always. She is truly a beautiful beautiful little one. She is GOD’S little miracle for sure. Her beautiful smile could melt anyones heart. You parents are truly blessed and I can tell by the piece on WCCO that you are very proud and thankful parents.
How wonderful that your daughter could have her heart rebuilt. I had a granddaughter born 23 years ago with the same heart problem and at that time they did have the knowledge to do the surgery. She was home for 10 days before she passed away. It was our first grandchild and my daughter and son were devestated. Two years later they had a healthy baby boy.
Thank goodness they have the knowledge they do today to save babies like yours.
Comment by Steve Jewett on January 25, 2008 2:43 AM
Dear Jesse, Juana and Etta,
Thank you so much for the update and new photos. I will share them with Harold and Helen on Sunday. You continue to be in our prayers and we will begin to pray that Etta’s next surgery will also be successful. She is a beautiful little lady.
Wonderful new pictures, what a doll you are Etta!!! And Mom and Dad sure know how to capture you! Best to you and Mom and Dad as you approach February.
Etta:
You are such an amazing little 10 month old…I am more fond and proud of you daily!!! You bring so much happiness to us all and we love you dearly…
You’re always in our thoughts and prayers…
MUCH LOVE!!!!
I was a student at jills school in karlstad, mn. I went there for a long time and knew jill pretty well. I also have a child now 11 that has had 3 heart surgeries since birth. His condition was named tetrology of fallot. He was diagnosed by his pediadric cardiologist, Dr.Hagler at Mayo Clinic. I understand the diffuculty trying to make something out of nothing. His first surgery was at 8 mos, again at age 5 and at age 10.More to come and never sure what the next outcome will take me to. I just hope and pray that his next surgery,he wont need a transplant. Its a hard thing to go through, especially alone, like me. When you child goes under the knife,you could only pray things go well . I always say, ” Hope for the worst and pray for the best.” Its really hard to see your child in pain and never want to see them suffer. His condition is still a mystery, to all of us, it isnt hereditary, and wasnt really explained why he was born with this. I m not sure about your finances, I was able to recieve SSI for my son 2 times. You might qualify to get it for her if you havent tried, everything helps when you need it. My condolences go out to your family. I feel for all the parents dealing with these types of conditions, as they are very painful and dreadful to deal with. My sisters will never understand the pain I go through every time my son has a surgery, and will never understand my personal feeling on this subject. Their children were born healthy. Take care of your beautiful little girl, and keep praying for her, there is a god and guardian angels out there, I promise you. An angel has protected my son every time, and so will one, for yours. I’ll Pray for your daughter as I pray for my son, they are precious souls, and deserve something out of life. To live. God Bless your family and the best hopes for the future.
Dearest ones we are praying for you..Just remember out of all this we have testimony for when those families come into our church with their special needs which only a few can touch and understand……You are so strong.. Jesus we ask for a quick healing so they can return home..we ask for the air of the purest measure to start flowing through her lungs..we ask for the angels to come down and give strength to you both. Jesus we trust in you and we know that YOU LOVE THEM…Jesus bring them home quickly to those who love them most are waiting..Praise you name
We are praying are a speedy recovery. Please let us know if you need anything while you are in Rochester or at home. Matt and I are both home till monday pleaselet us know if we can do anything. I could even come and play with Solvej if you need me to. GOD BLESS
Matt and Chris
Hello Etta and family!
Such great news that you are all safely home. I will share the news with Helen and our entire congregation today at our celebration of worship. God’s continued blessing on your family.
Welcome home to all of you. I am sure your beds felt wonderful. You are truly and amazing young lady who has captured the hearts and love of so many people. Continue to heal and be yourself (a happy go lucky two year old). We will continue to pray for you and thnik of you always.
ETTA!!!
Have fun at Ron McDon’s and safe travels home!!
Can’t wait for our next slumber party!!
Love you lots!!!
Yeah that is awesome we are looking forward to seeing you soon. Please let us know if you need anything. You have our number.
Love the Newvilles
So happy to hear Etta is doing well. I’ve been following along with the progress and praying along the way. She is a blessed little girl!! God has big plans for her!! Hope you two are getting some rest, it’s exhausting I’m sure. Love you all Great Aunt Carla
Hello dear ones, Now i know how to let you know that I am praying and waiting for you to come home. I want you to know I am so happy that you are doing okay. If you need help this weekend please let me know.What do you need money footd prayer that is obvous:) love you so much guys and Etta
You are a trooper and a ray of light
Love ya The Larson’s
Matt, Joey, Christian and Jaedon
We have been praying for your fam. Praying for a speedy recovery and return home. Please give Etta hugs from all of us. See you soon.
The Big Newville Clan
Hello Etta and family,
I shared the great news of being moved from ICU with Helen this evening. We are all excited and humbled by the healing power granted to children by our loving God. We at New Horizons are also lifting up for blessing all of the skilled and dedicated souls that caring for Etta and her family. All of you are continually in our prayers.
hello sweetie….
Oh, our little Ettabun…we cannot wait to hear that you are up and about…you are a brave and strong little lady…we pray your pain subsides and you are up and at it in no time.
We love you!!!
Etta and family: we are praying for your recovery.
Hello Etta and family,
Thanks for the updates. I share them with Helen as soon as I read them. All of my “prayer warriors” are focusing on Etta’s recovery and the health and well being of your family.
Steve
Good Morning!
You are very amazing an inspiration for all of us. Keep up the recoveray and maybe you can enjoy some time in the courtyard.
You are in our thoughts and prayers as you continue to heal.
Hey baby girl! Just wanted to tell you how proud of you I am and how much I miss your cute little nose. wish I could have stayed longer with you at the hospital, but Aunt Stacey has to work so she can buy Etta Bun more monsties! Love you so much and hope I get to see you soon! Love you!
oh etta bun……
miss you much. praying for your strength and courage…
you’ve got a great bunch behind you…Daddy,Mommy, and Solvej love you very much!!!
be strong little one…
~~RLA
Hey Etta – It’s Uncle Jon. I missed seein you this weekend, and I can’t wait to see you! Get well…whats up jesse and juana
oh…. Etta bun….
so, you’re website kicked me off…but I’m back!!!
You be a good girl….we’re all praying and thinking about you….
don’t touch your tubes…they help you….
Grandpa and Grandma Arias can’t wait to snuggle with their “little girl”….plus…Solvej keeps checking you out and can’t wait to play again soon.
Sleep tight sweet pea…..MUCH LOVE!!! and snuggles….
We pray with you and for you. The website is very helpful in keeping us up to date on Etta’s progress.
Good luck this morning. We are all praying for Etta and the family. Take care and enjoy the warm weather as you wait. Hope to see you soon.
Hello friends,
Great-grandma Helen just contacted me about Etta’s surgery. I immediately contacted my “prayer warriors” and now I am contacting you so that you will know that many around the world are praying for Etta and asking a blessing for all who will participate in her surgery and will be caring for her post-op. We will lift up all of you in our prayers in our Celebration of Worship this coming Suunday.
What a precious little one! Etta’s pictures made me smile. She looks like quite the character. I will be thinking of her and praying for Etta and her family.
My granddaughter, Olivia 1.5 years old, has HLHS.
It warms my heart to see Etta looking so happy and healthy.
Deb
Hello! I went to high school with Etta’s Aunt Regan. She was kind enough to inform me about your daughter’s heart defect and share this webpage with me. You have a beautiful and amazing little girl! Our youngest son has Double Outlet Right Ventricle and Transpostion of the great arterties. He had the Bidirectional Glenn Procedure in December and the Fontan is next in a couple years. The resilience of these little kiddos is truly incredible!! We will continue to keep you and little Etta in our thoughts and prayers!
Amber Nietert
Brekin’s Carepage name: BrekinNietert
Sending you our love on the “day of hearts”… we love you and are thankful for you and your parents and your sister and the amazing MD’s/surgeons/healthcare team whom helped your heart!!!
OH ETTA!!!!
Thinkin of you daily… love to you always.
I was just reading back on your journal and the first year of your life…. you’re almost two (well 22 months to be exact).. you’re a big sister .. and you have a new puppy!!!
We need pics…. we need updates!!! I miss u everyday, you’re the cutest
We miss you, we haven’t heard from you and we want to hear your cute lil voice and random sounds….hope all’s well in Ettaland!! much love!!
Good Afternoon!
Just thinking of you and thought we would say “hi”. Hope all is going well and that you are enjoying this summer.. I know it is going by ever so quickly.
Stay cool and our best to all of you.
Etta!! WHAT is up … we miss you and just wanted to check in and see what your latest tricks are!?!?! We hope that the weather gets nice so you can go and play outside!!
lovin’ and missin’ ya!!
Miss Etta – We miss you lots! Would love to see you again. Hope your mama and daddy are doing well.
Happy First Birthday, Miss Etta. Hope you all enjoy this wonderful day!!!
Happy Birthday to you, Happy Birthday to you…happy birthday dear Etta, Happy Birthday to you!!!!!!!!!!!!!!!!!!
YEAH for Birthdays!!!!!11111
Etta,
I woke thinking of you today, so I decided to check your page… nope, no new news… then I realized it’s your birthday!
Happy, happy birthday sweet girl. You have touched many.
Love,
Sarah
The Bun’s almost ONE!!!….. can’t wait…you’re such an amazing little one!!! see u soon….
Dear Etta,
Happy First Birthday! We at New Horizons continue to pray for you and your entire family. I hope that you have a great birthday celebration and that your parents will post some birthday photos so that I will be able to share them with Helen and Harold.
Hey you guys! Congratulations to Etta… you made it to the one year mark with flying colors! We’re so happy for all 3 of you and keep you in our prayers.
Looks like you were getting ready for surgery while I was in the hospital having our baby! Here’s the quick intro of Malakai Jevery Jaspersen, newest member of our household. He looks forward to meeting little Etta (maybe this summer when we visit?)
God’s blessings… we miss you guys!
You’re the coolest….now use your cutest lil look ever and ask Dad and Mom to post some new pics of you and your buddy Seven….
we love u crazy kids!!!!
PICS! we want pics! please?
Just wanted to stop by to show some love to the fam. May you continue to find strength and support from God, and the community of people He has placed in your lives…
Can’t wait to see Etta runnin’ around like crazy as soon as she starts walking!!
Damaris
aka
Hi you guys. Thinking of you often. Hoping and praying that this spring brings a BIG ‘OL bunch of newness and healing to all of you. I’m still up for duties as a watcher whilst you paint any closets that need painting. Let me know and I will clear a day on my schedule. Love all three of you so much, Gena and the girls.
Can’t get you guys out of my head. Hope you are settled back at home and that Etta is recovering beautifully. Praying that you get some time to be just a regular ol’ (healthy) family of three, with no “special” circumstances for awhile. “Boring” life is beautiful, no?
I hope we cross paths soon!
Sarah
Thank you for sharing your story and Etta is lucky to have such wonderful parents supporting her through the process! I wish you all the best and you are in my thoughts.
To our fav 11 month old!!
We needs updates and pics…. and tell us/show us Seven…
k, hint, hint….
peaceandlove, xoxooxxoooxxoxoox
Jesse, Juana, and Etta,
Here I was, thinking of you guys and clicking on my old bookmark to see if you had your website up. I was so surprised and happy to see that it was! And then, roaming around, I discovered that sweet Etta has had another surgery! Wow, you guys.
Also, I was struck that she is almost a year old. Has it really been that long since I’ve seen that chubby little Ewok baby, with the sticky-upy hair??? I haven’t yet looked at all the pictures, but from the few I’ve seen…. *pitter patter* Seriously you guys. Wow. Beautiful.
So, my offer still stands- if you ever need a stopping place on your travels to/from Mayo, you are welcome here. Give me a 5 minute warning, and I’ll even have tea on. =) Here’s my info again: 800 3rd Ave SE (from Hwy 14, turn south on 8th st. and go 1 block. We are the big brick house on the left.) 507-835-4863
Lifting you up in prayers and thoughts and sending peace and healing your way…
Sarah
I hope all is going well after Etta’s latest procedures. She has grown so big! It is great to see you feeling better too Jesse!! Quinn has been doing well, I just hope we can get through this flu and rsv season untouched…maybe we will see you again for the fontan, as were in at the same time for the glenn. God Bless your family – Becky and family – carepages.com ; page named Buckridge.
My ex step-son, Josh, is an 8.5 year old survivor of HLHS. I will pray for Etta! May God continue to bless you with His grace and mercy! Praise Jesus!
http://www.carepages.com
CarePage Name: JoshuaThomasSpencer
Dear Jesse, Juana and Etta,
Thank you for the recent photos. I printed them and gave them to Helen and Harold. Every Sunday our congregation prays for your family and you are also in my daily prayers. I hope that all of your traveling has been safe and that you are looking forward to the promise of Spring. At New Horizons we are remodeling the vacant space next to us into our new sanctuary. On February 29th we will “Leap” into our new sacred space with a special service. Please keep us informed.
Hey gang!!
Hope all is well. You’re in our thoughts and prayers. Etta is a champ and so are the two of you!!!
Love to you all D and N.
Love you guys. Praying for you on a daily basis
Etta,
Did you know that today (yes the days of “hearts”) is national CHD Awareness Day!!
How fitting huh?? Thinking/loving u always!!!
Hey Mini Bun and Rents!!!
We loved the new pics…you are a rockstar baby!!! Looks like the Nurses and Dr. Burkhart are pretty proud of you!!
Let us know how you are doing!!! We love you lots.
Your Etta is beautiful!! I was just checking your website for news of Etta–she has been in my prayers daily and is good to see she is doing well. What a precious little one. I will forward the WCCO special report on her to Nathan & Katy as I am sure they would want to see it. Take care of that little one and will keep her in my prayers. Janet
we are sad to say, the windchill and whiteout condidions will keep us away….
much love…talk to you today!!
hey all….Just thinking about you…wondering how Etta’s post op day one went…updates…photos…we request!!
much love
Hi you guys,
Praying all went well today. You are not far from our thoughts. Praying that you sensed God’s big, warm, cuddly blanket around all three of you today as you walk out one more step of the journey. Lots of love from all us girls, Gena.
Etta, Jesse and Juana,
Etta I have prayed that todays surgery went well and that you are on your way to recovery. You are such a sweet and strong little 10 month old. I was very glad that I could stop by and see you yesterday.
Jesse and Juana thank you for letting us stop by unannounced yesterday. It was such a blessing to me to share some time with the three of you. I hope and pray that the grace and hope of God was with you last night and today. Let me know if there is anything that I can do. I’m praying for the three of you.
So glad we found you guys again. I had to laugh as people at work all came to tell me about this story on WCCO about a heart baby. Here it was you guys! You guys- she is BEAUTIFUL! Oh my, she takes my breath away. Praise God for that sweet one. I’ll keep her in my prayers for this new proceedure. I was wondering who her doctor in Mankato is? If you have down time in the PICU drop me an email…I’m thinking they may have the same doctor?
Etta, Jesse and Juana:
Today is another special day for all of you. May God’s strength and love be with you.
You are in our thoughts and our prayers.
Hello beautiful little girl! Jilly and I are praying for a safe surgery today. We love you!
Uncle Chris and Aunt Jill
hello darling Etta!!
Our thoughts and prayers are with you and your Daddy and Mommy today…we are with you in spirit!!!!
Much love!!!!!!
Jesse, Juana and Etta,
We’re keeping you in our prayers. God has kept you going and blessed all of you through every step. Amazing, huh? Looking forward to good news.
Love ya.
You are all in my thoughts and prayers. What a beautiful little girl God has given you! It is clear why God chose you as the parents of little Etta. You are doing a wonderful job seeing that this precious gift is cared for properly. Thank you for sharing Etta’s story as this is a perfect example of God’s healing power, love and faithfulness.
Dear Jesse and family, I spoke with you this evening from Barack Obama’s campaign headquarters in Wisconsin. You graciously shared your web site with me. I will keep beautiful Ella and all of you and her medical staff in my prayers. Tomorrow morning I will call the folk on my prayer chain at church so many more prayers will be lifted for you and yours. You have a precious gift and I know God will grace, protect and shine on her.
Hey there sweet mini bun!!!
We are thinking of you and sending our thoughts and prayers your way…our advice…extra smiles, extra laughs, extra silliness!!! You’re truly amazing!!!
Thinking of you today and always!!!
Good Afternoon!
As you prepare for your trip back to Rochester we wanted to send our best to all of you. You are all an inspiration to us.
Our prayers and thoughts are with you.
Dear Jesse, Juana and Etta,
I just spoke with Helen and she gave me the WCCO web address for your video. Etta is beautiful in the photos and stunning in the video. Our blessings and prayers will continue to be with all of you as you prepare for the “tune-up” surgery.
as i read these other stories i realize once again how lucky i am that my son survived h.p.l.v. all those years ago……….amazing
thank you for reminding me……..peace
Hey there Jesse and Juana!
it is good to see the goodness of the Lord. Your trial is not to be taken lightly; I pray God will reveal more of Himself as you live day in and day out; and for your child, well, you KNOW God has big plans for her! Blessings to all three of you.
Jesse & Juana,
Let me know if I can do anything to help you guys out. Please feel free to call me if you need any site development done. Have you considered getting your own domain name? I will host it for you for free through my company.
Oh, tell Janice I said Hi
hola familia, me algera ver a Etta, esta muy bonita, se ve muy bien al igual que Juanita y Jesse, espero que todos esten bien y estoy muy contenta que hayan hecho este documental sobre ella ya que esto fue una gran experiencia. los quiero mucho y estamos orando para que todo salga bien.
Hi Etta (and parents),
This is my first time at seeing the video, photos, newscast on WCCO as I’ve been laid up with knee surgery. It was a blessing to see you a happy baby, already trying to walk. I’ve been praying for you, Mom and Dad often. You are a special baby, a miracle baby. I know God will keep blessing you and using your life in the lives of many others. I’m glad I’m a part of your family.
Love you much,
Aunt Barb
Dear Jesse, Juana and Etta,
We watched the special on Etta on WCCO and were not only touched by what a sweet baby Etta seems to be, but also relieved to see her doing so well. We are pregnant with a little girl who has a similar condition: single atrium, AV valve, ventricle, double outlet RV and possible heterotaxia. We have noticed Dr. Singh’s name in the guest book several times and are thankful not only that is he on our case, but that you put up this site and guest book so that we could see Etta and the other wonderful children who have been through this. Our baby will go through the same type of surgery that Etta has and is going through and we cannot tell you how much it means to us to know that we are not alone. We want to wish you all the best with your beautiful daughter and we hope that you will keep up this site and continue to touch the many, many people who are reaching out in a time of need.
Thank you so much,
Jessica and Terel Letcher
Le Sueur
I wanted to say what a pretty little girl you have. It’s good to see a little one with HLHS that is doing well. On July 19, 2007 my wife and I had our first child (Abigail Rose)…she was born with HLHS and we were aware of the problem ahead of time and while being sad we had a positive outlook. When she was born however, they found a number of other problems and there was nothing they could do for her. We lost her early on the 20th. She was 21 hours old.
My wife is now pregnant with our second child and soon (Feb. 11th) we have the ultrasound to find out the sex. Hopefully they won’t find anything else as that was when they found out there were other problems.
I wish your little girl the best of luck with her final surgery and I am sure she’ll be just fine.
Wishing you all the best.
Mike and Nicole Maciazka
Coon Rapids.
Dear Arias family,
I was forwarded your story and I was very touched to see your beautiful daughter’s story. My son is 2 1/2 and also has HLHS. With my son too, you would never know that there was anything wrong with him. It is so amazing what these wonderful doctors can do. Thank you for sharing your story with so many and helping to raise awareness for heart defects! May God bless your family!
http://www.caringbridge.com/visit/bradygesin
Julie
Etta is so beautiful and has such a wonderful little personality. I saw the story on WCCO and will keep you all in my prayers looking onward to the next surgery.
A very good friend of ours from Iowa had a little boy whom is now a little angel in heaven and I am sure is looking over your little Etta and a wonderful outcome with that next surgery!
I work at the Mayo Clinic in Pediatrics and you could not have come to a better place! Bless you all.
Love You!!!!!!!!!!!!!!!!!
My mom told me about your story that she watched on the news last night. I watched the video online. Etta is adorable and very sweet. My daughter Abby also has HLHS. She was diagnosed inutero, so we knew that she would need surgery before she was even born. She has had all three surgeries and was doing great until last year when she got very sick and ended up spending 5 months at Children’s Hospital. Her cardiologist is Dr. Singh from Children’s Heart Clinic. Abby was able to come home in July last year and is currently waiting for a heart transplant. She has three IVs that run continually and now we are just waiting. But she takes it all in stride and amazes us everyday. She also has two younger sisters. Clare who is 2.5 years and Eva who is almost 1. We know the ups and downs of HLHS. I hope that everything for Etta continues to go smoothly and that any bumps in the road are minor. We will pray that her next surgery goes well. Thanks for sharing your daughter and her story with us.
Sincerly, Heather Ostlie and family
http://www.caringbridge.org/mn/abbyleigh
Dear Jesse, Juana, & Etta,
Saw your video clip on WCCO’s website this morning. Etta, you were so sweet (as always)! We praise God for all he has done for all of you and look forward to all he will continue to do on your behalf. Jesse and Juana, you have been awesome parents. It’s so much fun to see wonderfully you care for and interact with Etta. We look forward to seeing you again – hopefully in the near future.
Love you! xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo
Mom/Grandma & Dad/Grandpa E.
Jesse & Juana, I lost touch with you after the first surgery, but remembered you before the Lord for Etta’s needs (and yours). I was happy to see you all on WCCO last evening and to realize it was Etta. What a beautiful “cutie.” Our prayers will continue for you all. God bless you abundantly!
my son , Eric, was born 17 1/2 years ago in Alexandria Minnesota with hypo plastic left syndrome. he was not properly diagnosed until he was near death, and i met a doctor who told me he was blue at 3 1/2 months old(thank you dr stewart, with all my heart). i brought him to the clinic several times per month prior to that, and was regarded with suspicion and asked things like ” do you change his diapers?” and “are you feeding him every day?” due to his low weight and constant diaper rash ( i remember every word of that dr odland and dr ???) we ended up at mpls childrens with dr singh (my hero)from the childrens heart clinic, and they told me that there was very little if any chance of survival, but that they would try. i was in shock. they said that Eric was their 5th baby with “hypo left” and that all but one had died, and the survivor had moved to Europe and outcome was unknown. amazingly, dr helseth, with his giant baseball glove sized hands (rest in peace, dr H) performed the damus-kaye-stanzel procedure. it worked!!!!
a few months later he had a bidirectional glenn shunt, and then a hancock pericardial patch.
eric is now 17 and is a brilliant, talented, headstrong, tall, handsome musician with a promising future ahead of him. for that i am forever grateful and i love to hear about other survivors of this recently conquered heart condition.
had eric died , i would have granted the doctors permission to use him to learn about h.l.v., just like erics uncle stevie, who died in 1971 of Helaine membrane disease. ( all 7 of the mckoy septuplets had h.m.d. and survived it, due to the generosity of people like my mother who can see thru their grief to a better tomorrow)
i guess i just wanted to share our experience with you and tell you that you are in good hands, and you are lucky to be born in a country where there is medical help available for people like you and i and our children. we would have lost our babies had they been born in certain other countries. Eric racked up a quarter million dollars in medical bills in his first few months. the children’s hospital gave me a free hotel room on site, free meals, even paid my gas money after he was released. i was totally taken care of, weeks and months at a time. how cool is that?
also, just in case i sound preachy, i saw you guys on tv and i can tell that you are my kind of people. you know, normal everyday people, who work, play , and live like everyone else .
i send you lots of good vibes and peace…..rhonni
Jesse and Juana
What a wonderful story on WCCO. I didn’t see it, but was told by Dr Houlihan and checked the web site. Etta, you look just beautiful, seeing your pictures brings a smile to my face.
Bless you all and we’ll see you soon.
Hugs…
Terri
ISJ Cardiology
We loved watching your video on WCCO! You were so cute! Can’t wait to see you again soon.
Loved seeing you on channel 4 last night. I had seen promos all week and wondered if it wasn’t this little one! I LOVED how fascinated she seemed to be wtih Dennis Douda…cute, cute!
I saw your story on WCCO last night and just wanted to stop by and say what a beautiful daugher you have! But of course you already know that
) I am glad things are going so well with Etta’s surgeries. My thoughts will be with you as you continue this journey.
I just wanted to contact you about the amazing technology they have these days about this heart diease. My son was born 19 years ago with the same heart defect. At that time our only option was to take him home and enjoy our time. We were fortunate we had two months with him which were over the holidays, which made them very special to my husband and I to be able to have a Christmas with our first child. We now have two beautiful, healthly sons, which we cherish with our whole beings. I am so glad they have made so many options for parents and children, so no one needs to hear the devasting news we did about a newborn child. Good Luck with future surguries and enjoy a long happy life with your daughter.
Karla
Praise God for this opportunity to tell your story to the world. Praying for you all daily. Love you so much.
I saw the piece about Etta on WCCO and wanted to tell you what a strong and special family I think you are. Besides being beautiful, Etta is making a huge difference for so many other children by being a pioneer. The stress you have gone through is going to make it better for other families.
Though Etta’s heart may not look like ours, I have the feeling it is always going to “work” better than most.
thanks for sharing the story
Great Video too!
What a beautiful little child. Our prayers are with all of you during this journey. I am so happy she is doing so well. Miricles do happen.
What an adorable girl Etta is! She is blessed to have parents who are so involved in her care. I am thrilled that you are documenting her care and surgeries so that when she gets older and has questions, you will be able to provide her the answers. I can relate to what you are going through, with having a son born 13 years ago with Hypoplasic left heart syndrome, transposition of the great arteries and coractation of the aorta. the pictures you took of Etta with the plastic over her open chest brought back so many memories for me and what I went through with my son Shane. I made a scrapbook of Shane, all of his surgeries, pictures of him as he was healing and I think that helped me out alot…..seeing the progress and all. I also kept a daily diary. Health care has come a long way since 13 years ago. You are strong parents having to go through what you are with Etta. I wish you my best in your journies with Etta and her health care, and I will keep watching for updates on her. Be strong and Be patient is my advice to you. Keep up the good work!! Theresa
thankyou for sharing your litle sweet heart. i worked with many famlies who have children like yours i am glad your baby is doing so well.
Etta, your so beautiful! I just read the article on WCCO, and I know exactly what your going through. I have faith that she will pull through this with a breeze. My son who is now 9 years old has only one ventricle. His diagnoses is Levo-transposition, VSD, single anatomic left ventricle, coarctation of the aorta. He isn’t defined as hypo-plastic left heart syndrome, but very simular. He has had 4 heart surgeries, 4 days old was the repair of the coarctation, 2 weeks old was the Glenn Shunt, 3 months old for the Damus Kaye Stanzel surgery, and 2 1/2 for the Extra-Cardiac Fontan. Before the Fontan surgery his 02’s were mid 60’s and now he is anywhere from 93 to 97. Which is awesome. I just wanted to share with you that you aren’t alone and now that you shared your story you’ll have so many people that will pray for your beautiful daughter Etta.
If you need to vent or just someone who has been through this and understands, your more then welcome to email me back and I will share my phone number with you. dbeverson@hotmail.com
May God be with Etta and your entire family and friends. I will pray for her and see that she is guided through her up coming surgery with loving angels.
Heather
Ramsey, MN
Jesse, Juana and Etta-
I wanted to let you know that you are always on my mind and in my prayers. I just happened to be watching tv and saw Etta during a commercial. It was a really nice suprise. She is so cute. Let me know if you need anything. Hope all is well, Tracy
Hey Juana and Jesse just saw your story on wcco.com it’s great to see your all doing well!!
best wishes
Tim
Little Etta is a beautiful miracle! I will pray for her that she continues to be a healthly little girl and that her final surgery is a success.
I have a 12 year old nephew in Chicago who also has HLHS. I was there with my sister and brother-in-law when Willy had surgery #2 and #3. Thanks to the miracle of these 3 surgeries, Willy is a normal little boy today! We are truly blessed!
Saw your story on WCCO news tonight and wanted to send a note of encouragement. I too have congenital heart disease, although a different set of complications than Etta faces — but the newscast made it sound like she’ll be having a shunt put in sometime in the future, and I’ve got two of those (the Blalock-Taussig that apparently often go in conjunction with Norwood). Mine are obviously a little different from Etta’s — mine are over 23 years old, and I’ve lead an almost unbelievably normal life! So apparently they work! Good luck to you all!
Hello! I watch you on the news tonight and was soooo touched! I also have a son with Hypoplastic left heart. He is 7 1/2 years old and doing wonderful! Your little girl is so cute! All of the pictures and video that was on the news tonight is just the same as my son. We also have no idea that Tyler had anything wrong with him when he was born. I just thought I would send you a little note that they do grow just like any other kid, but with a special heart.
Heart Parents,
Becky and Spence
http://www.caringbridge.org/mn/tylerschnacky
I just watched the piece on channel 4 on your daughter. What a doll she is and so happy. It was so cute to watch her watch Dennis Douda. We are so glad for you that her outcome has been so good and positive and she will grow to be a lovely adult.We know you’ve been through a lot as parents and hope you can find time for yourselves as well.
Blessings from a viewer.
Hello – I just watched the coverage of Etta’s condition on the news- and was amazed at the stress you have endured as parents and the great strength of your adorable little girl..just want to wish you continued good luck and let you know she is absolutely a doll so so cute!! She seems to be a pretty special little gal! Again wish you well!! Vonda Herding, Mankato MN
GOD bless you and GOD be with Etta always. She is truly a beautiful beautiful little one. She is GOD’S little miracle for sure. Her beautiful smile could melt anyones heart. You parents are truly blessed and I can tell by the piece on WCCO that you are very proud and thankful parents.
How wonderful that your daughter could have her heart rebuilt. I had a granddaughter born 23 years ago with the same heart problem and at that time they did have the knowledge to do the surgery. She was home for 10 days before she passed away. It was our first grandchild and my daughter and son were devestated. Two years later they had a healthy baby boy.
Thank goodness they have the knowledge they do today to save babies like yours.
Dear Jesse, Juana and Etta,
Thank you so much for the update and new photos. I will share them with Harold and Helen on Sunday. You continue to be in our prayers and we will begin to pray that Etta’s next surgery will also be successful. She is a beautiful little lady.
Wonderful new pictures, what a doll you are Etta!!! And Mom and Dad sure know how to capture you! Best to you and Mom and Dad as you approach February.
Etta:
You are such an amazing little 10 month old…I am more fond and proud of you daily!!! You bring so much happiness to us all and we love you dearly…
You’re always in our thoughts and prayers…
MUCH LOVE!!!!