Sunday, December 27, 2009

Tis the Season

My older kids have been battling strep throat the past couple years & even worse lately. . . so one week before Christmas they had their tonsils & adnoids removed! I know, how mean right before Christmas. . . But Gage couldn't miss any more school for his recovery, and quite truthfully, the deductible was mostly met thanks to Mr. Ethan. So we went for it and are praying for a happy and healthy 2010 for our whole family! And yes, they recovered enough to enjoy Christmas!
My favorite decor of the year was the addition of these new stockings. We had to buys new ones because I only had four. Ethan's is the green with poka dots. . . Santa left tickets in Ethan's stocking for our family to go see Mary Poppins to celebrate Ethan's birthday. So fun.

Gotta love the bed head and that it is still dark outside. I am so grateful for my family & friends, and to celebrate the birth and life of our Saviour, Jesus Christ this year. For His life makes it possible for us to be together forever as a family! Merry Christmas!

Monday, December 21, 2009

10 months old, and 4 months gone. . . I miss you soooo bad! I Love you, Merry Christmas!

Monday, December 7, 2009

AZ Republic Story

Their is an article today in the Valley and State Section of the AZ Republic on how blogs are therapy for mom with ill children. Ethan and I are talked about. Below is the direct link to where you can see the story and a picture of Ethan! The story is by Astrid Galven.

Thursday, November 26, 2009

Ethan's Run

After way too many hours on the computer, phone, sitting at HOA meetings, obtaining city permits, coordinating graphics, requesting sponsors, planning advertising, getting insurance quotes, and ignoring my children and house; I'm finally able to officially annouce Ethan's Run. I know I have mentioned it was coming. . . but here are the details.

All proceeds will go to The Congenital Heart Foundation at St. Joseph's to help families who are battling tough defects. It will help provide Transportation costs so parents can be at the hospital as much as possible (gas cards & bus passes), help w/ bills, and provide a fund for those who lose a child & need help w/ creamation or casket expenses). I plan on this being an annual event.

It will be in the East Valley in the Community of Las Sendas (northeast Mesa) Should be fun for all. There will be a fun zone at the park w/ bounce houses and snacks/treats. Children do not need to be registered! Click on link button to the side of blog to register online at . There is interactive maps to see the 10K and get directions. Or mail in forms can be downloaded through You can also check out info at (thanks Lowry's).

The 10K portion of this event will be competetive & professionally timed w/ awards (however I just hope to finish!). The 2 mile family fun run/walk will just be fun. All who register will get a shirt. After, you are welcome to hang out at the park and enjoy the fun zone (or hang out there during the run if you so like). I hope to also raise CHD awareness through this event and help encourage others to take care of the hearts they have!

Hope to see you there!

Wednesday, November 25, 2009

Happy Thanksgiving

May you enjoy your turkey and counting all your blessings!
I know I will a little more this year. . .

Friday, November 20, 2009

Eller Heart Calendar

The Eller Congenital Heart Center (St. Joe's) is putting out a 2010 calendar. All proceeds to benefit the congenital heart foundation. Our picture (above) is featured in the month of December w/ some other beautiful heart angels! The cost is $12.95 each. If you are interested let me know. I will have a link up on Monday to the new Eller Heart Family Council Website. Any heart families can turn there for resources or to check on whats going on in the "heart world".Posted by Picasa

Monday, November 16, 2009


I have no idea why this keeps turning sideways when I upload it! So I give up. But here is Ethan's headstone (just kink your neck to the left!) . It got set at the end of last week. I took a picture but the headstone was all dirty and I didn't bring cleaning tools. So I figured I will show the before pic for now. I have to mention how cute Greg was when we were picking out the headstone. Most pictures are oval. Greg felt "oval" was not manly enough for Ethan. He needed a tough "square" picture instead! But I do love how it turned out.

We met with the team. They have no idea why Ethan died (Disclaimer: obviously he was not a well child). The change in his heart failure meds and ventilator mode must of made him a little "off". Apparently they don't feel the heart failure meds affected his blood flow to his lungs. His heart and lungs must not have liked the changes made around 5 that evening. Ethan knew my feelings and my prayer. He got a little off that night and told his angel "the time is now right". Just like the poem Greg read at the funeral. Kind of beautiful to tell you the truth. I saw his ekg strips. No major arrythmia like I first thought (or was told). He just bradied down (heart litrally slowed down in sinus bradycardia). He eventully went into a funky rythm after he was "gone". Pretty peaceful. Enough said on that subject.

Saturday, November 7, 2009

Angels Among Us

I have been doing a little better. I am still overwhelmed w/ missing my Ethan. I have many ups and many downs. And I have struggled with how much he suffered. Although I hate the suffering that occurred, I have no anger or feel no hate towards anyone. I have had a few people tell me "It was so unfair." "Are you so angry?", etc. . . The truth is that as much as there are parts of Ethan's life that I don't like mentally, I can't help but only feel one thing when I talk or think about him. It is peace and beauty. Not beauty because he was so cute. . . But beauty because that is what he radiated. And he is not the only "one" that radiated beauty. You can ask any one who visited Ethan, other heart moms, and even some staff members who paid attention to it. Ethan had angels among him often. . . especially when he was not doing well. I did not see them. . . but they WERE there. God did not cause Ethan's physcial problems. But he sure comforted him through them. And thanks to ALL the faith and love of those who surrounded Ethan on earth, I strongly feel he probably stayed a little longer than he needed to.

I went to St. Joe's the other day for a "graduation ceremony" for the most complex heart babies of the year. The ones who made it to a more stable phase. Ethan was supposed to be there. . . But I really wanted to support my heart friends. . . So I went, and I brought a HUGE amount of Kleenex. None needed. Only one thought consumed me this day. "He is FREE, Ethan is free." The truth is if he were still alive he would be in California, on the ventilator, hoping to get a heart and lung match. . . . . As I said. . . he is free.

Thank you Ethan for enduring to give us more time. Thank you to those who tended to him from the "other side", and to YOU (all those that supported us, cared for Ethan, and especially those who prayed for us continually!)

PS: Can't wait to find out who "they" are one day. . .

Wednesday, October 28, 2009

W/ Ethan, hind sight is not 20/20

This morning Cannon asked me "why Ethan was never naughty?"... "Well son, he never got a chance to be. . . but if he had been allowed more time, I am sure you would have taught him all the tricks in the book!" ( Gotta love how purple he turned when he cried )

Last night the cardiac team at St. Joe's had their big M and M (medical review of Ethan's whole course). I have been anxiously awaiting this. I was well aware it would hurt to hear. But I had questions I wanted answered. I have had anxiety about this meeting and hope that I can work more towards closure once its over. We will sit down next week. But knowing my stress level, the wonderful nurse practioner who is over all the severe kids, called me last night to give me some insight.

The truth is he should never have had the Glenn and should have been listed for a heart AND LUNG transplant after his first surgery! Of course there aren't tests for everything, but their theory has some solid evidence. I will mention a few points. Ethan had pleural effusions even before birth and they were a MAJOR complication his whole life. They strongly feel Ethan had " leaky lungs" and a "leaky lymph system". This would of occurred at his pulmonary bed, where the blood exchanges the O2 and CO2. Fluid was constantly leaking into the pleural space oustside the lung walls. Treatment for this is DIURETICS to decrease the fluid overload. Ethan was on TONS. He was kept vascularly dry to keep his effusions under control. Because his left ventricle blob was pushing on his right side and his blood volume was always low (because all his fluid was shifting to his pleural spaces and because they had him peeing it all off w/ diuretics) his right ventricle NEVER grew to compensate and be able to handle the workload of the heart.
He needed a heart and lung Transplant. . . but there is a catch. . .

This is why hindsight may not have saved him either. Ethan had a right sided aortic arch (left is what we all have). HLHS & right sided arch is a VERY RARE and very lethal combo. So his aorta turned towards the center of his body as it left the heart and then wrapped around his esophogus (the big surprise from the first surgery). There was TONS of cutting and rebuilding that took place and one of the arteries off his aorta was sacrificed in the repair. That combined with a stressed pulmonary valve made them use a SANO shunt instead of a BT shunt (BT is the normal standard shunt used but would not have provided the adequate circulation needed becuase of the aortic repair). SANO shunts don't last as long and in Ethan's case, began to narrow and become compromised by the time he was 2 months old. Thus Ethan had to have an early GLENN (second surgery) at 3 1/2 months old. If the shunt went on much longer it could of closed off completely and he would have died. So basically we were rushed into Glenn surgery and there was never ample time to explore the true cause of his effusions. When the Glenn is perfomed the shunt is no longer needed.

Yes, I do get UPSET thinking they should have explored it more before the Glenn. There were plenty of signs starting BEFORE he was born. But I have to remind my self they have never seen an HLHS like him before, so they just didn't know what to do. And they followed the only proven/successful course out there for HLHS. However, it was not the course for my precious Ethan.

The other SANO issue is that even if they decided to list him for transplant after his cath instead of scheduling the Glenn, there is no guarantee he would have gotten a heart and lung match in time before his Sano shunt stopped functioning. That is why transplant hindsight is not 20/20. And of course, there is always the question of would the transplant have taken??? Not to mention the reality that we would have to have moved our family to California (which we would have done). There are still unknowns. But the bottom line is medically NOTHING was in his favor, and he suffered a LOT. . . But he also felt LOVE beyond measure from his family, the prayers from his HUGE support base, and from the STAFF that all wanted him to make it. And his journey has taught me a lot. Like no matter how dedicated and determined I am. . . I am not the one in control. But luckily there is a loving Heavenly Father with a plan that allows me to be with Ethan again one day.

I love you Ethan.

PS: It was the heart failure meds that caused Ethan's death. They cause vasodialation of the pulmonary vessels (to allow for better O2 exchange. . .) However Ethan's were already to big and leaky so they were causing more blood to pool in his lungs, and less to go towards his heart. His heart shut down. It is more complicated than that, but the basics is enough for now. I am drained. That may be another post.

PSS: As I am finishing this the cemetary just called and said his headstone arrived and will be installed with in 2 weeks. I am excited, yet can't help but feel another little dagger in my heart at this milestone.
PSSS: Oh my Ethan day. . . Just got an email from Las Sendas (our community association) that they approved my request to have an "Ethan run" and walk to raise CHD awareness and to support families battling CHDs. It will probably be in mid February or early March. More info will come!

Sunday, October 18, 2009

Mission Accomplished

We did it. . . We had a great, much needed vacation. . . and we experienced FALL! We even got more than chilly weather and autumn leaves. . . we also got in a great snow fight. Grandma Tudy's is always the best! The only thing missing was Ethan. . . who would be 8 months old today.

Gardner Village
Temple Square

After a day of rides & coasters we experienced
Halloween "Lagoon style".

SLC Temple

A fun ride with second cousins

Moments before the snow fight began

This park is around the corner from my Grandma's.
The boys were in heaven. . . baseball EVERY morning.

Lex even put up with it

Good times w/ the Grandmas!

Thursday, October 8, 2009

My Happy Place

So I have officially talked Greg into spending some of fall break in Utah. I would go there for several weeks every summer when I was growing up. I love Grandma Tudy's house. . . It is my happy place! I can't wait to take our little family up there and experience the "Fall". No offense Arizona natives. . . but Fall is not a strong sales point for Arizona. We are going to hit a theme park, go hiking, temple square, fall festivals, and play!

I really need to get out of here and just count my blessings. I have so many. It is just really hard not to be consumed with thoughts about Ethan right now. I don't want the memories to fade, but I do want the aching for him to decrease. It is hard to be focused on my other kiddos. I know that feeling will come and go for a long time. I have heard from a few that it takes about 2 years (ouch). I hope its not quite that long before the sting lessens. But I think new scenery couldn't hurt.

This week Cannon turned 4! Wow. We hit Peter Piper and had a blast. It was good to have a party for him. But I couldn't stop thinking I will never do that for Ethan. It is so terrible. I couldn't just enjoy the moment. I know time will help. And I am sooooo grateful to know Ethan is where he can't hurt anymore and that WE WILL be TOGETHER again.

Happy Fall-

Friday, September 25, 2009

Headstone & Tears

I paid the deposit and ordered Ethan's headstone today. I was dreading it but it was actually nice and uplifting. After going back and forth we decided simple and sweet. Ethan's above picture will be in the center. I have been very emotional for the last several days missing my little man. We went up to the hospital unit Monday and went to the D-backs game on Wednesday for the check presentation to Ethan's doctors from the fundraiser "Picnic at the Park". They D-backs foundation gave the Heart Center $25,000. That was $5,000 more than they were expecting. . . NICE! I did really well (no tears) for both events, but ever since I have been a wreck. I just miss him. It is nice to be with people who knew him well too (the staff).

The whole way to the hospital Cannon kept asking if we could go see Ethan's room where he died? Even though I told him, he was still perplexed that someone else was in Ethan's room. We took up our blue E sugar cookies (totally forgot to take a pic). After we set them down at the nurses station I started visiting with the nurses and my kiddos kept sneaking back over and eating them. Then, when we were at the baseball game I had a nice talk with Ethan's heart surgeon, Dr. Cleveland. We talked about a lot of stuff, but the bottom line is they wished they would have put him on the transplant list at birth. That would have been his only chance. His left ventricle muscle was large at birth (abnormal) but they thought it would eventually slow down in growth. It didn't. It just grew BIGGER and BADDER everyday! I hate that left ventricle! Oh well. We will still be doing an official sit down with the doctors probably at the end of October. They want to comb through his charts even more and study everything in detail before we meet. And let me tell you. . . it is a FAT chart!

Sunday, September 20, 2009

Trying to Live what I have Learned!

Somedays I am better at being more patient and loving than others. But those are my goals. To enjoy my children and friends more. Enjoy life as a whole. Not just get through each day. I have had some fun times with my kids lately, but first I will share my thoughts on my Ethan. It is one month ago (tomorrow) that he passed away. A month without holding his hand and rubbing his forehead. . . and a month since he has been freed from struggles that came from that stinking heart of his!

I have found the NEED to stay busy. I have started going to the gym. Although my physical body needs some serious help, it is more for the mental. It gets me out of the house, a new environment. I have a million projects I need to get done, but when I am home all day my mind gets to me more. I get sad. So out I go. The only problem is everytime I go out I seem to spend money. Anyone else have that problem?!*#

Lately I have been looking at Ethan's picutres and remembering all the good times. I miss him SOOOOOOO much that my heart physically aches. But I have to stop and briefly remind myself of the not so good times, and the pain he was enduring, and the long road he had ahead. . . then I remember he is so much better off now. He is where he needs to be and the sorrow is mine simply for missing him. He is not experiencing that sorrrow. He is full of joy and going about new experiences. I know he is a mature spirit on the other side. . . I bet he is so handsome all grown up!

Tomorrow I have to go to St. Joseph's hospital. I am so nervous. I don't want to be an emotional wreck! The Eller Heart Center is doing a photo shoot for a congenital heart kiddos calendar! It will be a 2010 calendar to sale to raise money for the heart center. On the month of December there will be a siblings of heart angels photo. My kids and a few other families will be holding a picture of their baby that lost the CHD battle. I think I am going to take my kids up to the heart unit first. I have a friend and her baby (Eva) plus all the staff that I would like to say hello to. My kids and I have been making blue frosted "E" sugar cookies today to take up!

Other than that it has been a week full of kids activities. Soccer, tumbling, piano, soccer, and more soccer! Gage & his friend got recruited up to the competitive league for soccer. However Greg is the coach of his old team, and without the two kids the team is short players. So guess who gets to play on two soccer teams! And yes, Greg is still the coach of one. Not to mention Cannon. He is loving getting to play a sport. Lexi is still my sweet, smart, and talented only girlie!

Thursday, September 10, 2009

Beautiful Poem

We have been busy. We had a blast in the mountains over labor day weekend. And somehow I convinced Greg we needed to be soccer coaches (thought being involved right now would be good for us and our kids). Not to mention the 6 months of ignored chores and the finishing touches that need to be completed in regards to Ethan's life. I did scroll through some heart heart mommy blogs the other day though and found this poem. I loved it. My favorite compliment I get is when people say they have been changed for the better by Ethan's story!

Somewhere…someplace… today…
A family is waiting to hear…
Is something wrong with their baby?
The answers aren’t quite clear…
This family has entered an unwanted world…
And they just don’t know what to expect…
Somewhere…someplace… today
They first heard the words: heart defect.
And how they hoped this was not true…
And thought… this cannot be…
I too… know just how this feels…
For one day…this was me.
A man and a woman embrace…
Their baby is in surgery…They long to see his face…
They haven’t got to hold him yet…Without…a cord or line…
They pace the room awaiting news…
And hope she’ll be just fine.
Prayers fill this busy waiting room…And mom and dad are scared…
The tiniest hearts are repaired.
A child’s growing fast…Smiling,laughing,thriving…
His mom thinks…can this last?
It’s almost easy…to forget…That anything is wrong…
Her child seems so strong.
Somewhere…someplace… today…
A little boy fights…just to live
A father holds his tiny hand…His love…all he can give…
The doctor’s are all baffled…They fear that he might die…
Somewhere…someplace…today…A family says goodbye…
Somewhere…someplace…each year..
More than 40,000 families will see…
What it means…when something’s wrong…They’ll face a CHD.
Today…for just a moment…Stop…remember…reflect…
Make time to tell someone you know…
“I’ve been changed by a heart defect.”

Author - Stephanie Husted

Wednesday, September 2, 2009

Funeral continued!

Sorry about the long previous post. It is our funeral talks. I wanted to add them to the blog before I sent the blog to made to a book today! Cutest blog on the blog does it. It is so easy and quite reasonable (cheap)!
I wish I would have had this picture on there though. As sad as it is, it gave me quite a laugh when I recieved it! It's just a funny, akward sign! I needed a good laugh before I went to bed. I have had way too many tears today. At one point I was crying and Cannon walked in, put his hands over his eyes and pretended to be sobbing with me. It was sooooo cute and funny. Usually Cannon is shedding real tears, it was good to see him have to fake it today! He is healing :)



The Funeral Program

Ethan’s Life Sketch by Heidi
Ethan Greg Skidmore was wanted by his mother and father for quite some time. The news we would be expecting a child came right after we decided it must not be meant to be. With the excitement of this news I prepared to endure another 5 months of nausea and vomiting and Cannon began his plans of becoming a BIG brother. What I didn’t know is that Greg, myself, and our family would be embarking on the most glorious, sacred, and beautifully heart wrenching journey that we had ever been on.

Four and a half months into the pregnancy we had our ultrasound. We brought Alexa and Gage with us. Alexa took the news of a third baby brother with class and Gage was ecstatic. Greg left with the children while I waited to see the doctor. That is when I was told there was something “drastically wrong” with the left side of his heart. We soon learned it was hypoplastic left heart syndrome.

From that moment on, we have forever been changed for the better. Before Ethan even arrived, our dearest friends and family rallied with earnest prayer, love, and care. The outpouring of support was, and still is, immense. And we soon found that our hearts and our lives would become intricately connected with new found friendships. Other “heart families” in the “heart world”. A subculture I never knew existed. We have made bonds that will last through this life and the life to come. For that Ethan, we our grateful.

Last December we learned Ethan wasn’t going to play by the rules. He developed fluid around his lungs in utero. Pleural effusions is the term. A term he came to know too well. It is a common complication after the THIRD surgery with HLHS children. And Ethan wasn’t even born yet! We were told he probably wouldn’t survive. Fortunately the fluid did not spread outside that pleural cavity and it eventually decreased so that he could be carried to full term. And on February 18, 2009 we had our super-hero. He was delivered via C-section. And as he was passed off from one doctor to the next all I saw a beautiful little boy, with a full head of dark hair. For those of you who don’t know, all of my other babies were born bald!

Ethan’s first 5 days were perfect. Well perfect if you kept him wrapped up in a blanket like a burrito and had his primary music playing. Ethan showed us his disliking for being bothered before he had even learned to give dirty looks. Every two hours the nurses had to assess Ethan. It was so predictable. As soon as the first side of the blanket was unwrapped the cry began. It wasn’t a cry of sadness, but a cry of telling nurse off (so to speak). And then, as soon as the first side of the blanket was tucked around him he instantly stopped.

It was also during these 5 days that we all came to love Ethan’s eyes. He focused and made direct eye contact from day one. His eyes were the window to his soul and showed us his spirit was wise beyond his years. His eyes’ expressions were passionate and fiery at times. They showed us his determination and desire to survive early on.

Then came day six. We tearfully handed over our baby to the OR team and put all our trust in the Lord and the wonderful team of doctors, nurses, and respiratory therapists at St. Joseph’s Hospital. After the surgery our surgeon came out and told us they had a surprise. Ethan’s already small and fragile aorta was wrapped around the back of his esophagus and came back in between the trachea and esophagus. Something he had personally never seen in all his years of experience. He explained that some complication may arrive from the repair, time would tell. Again, Ethan was not playing by the book. The first week of recovery was going great. But shortly after being extubated we learned that Ethan’s vocal chords were paralyzed and his airway was compromised. He required a tracheotomy to breathe and a feeding tube to be placed. As Ethan was dealing with that set of complications he was also dealing with pleural effusions, and multiple chest tube placements. The reality of a long hospital stay full of multiple procedures was setting in.

Our dedication to giving Ethan love and comfort became stronger. We were determined to get him through his struggles. Either Greg or I were always by his side. There were only on a few necessary times that we left Ethan. Birthdays, baptisms. . . And it had to be in the trusted care of one of his grandmothers. It is during this time that we learned how much Ethan loved to hold fingers, have his forehead rubbed (from right to left) and suck his pacifier, and not just any pacifier. The one that said “I love daddy” on it. (I still think Greg was sneaking sugar on it.) But that was the first sign of the eternal bond that would exist between Father and Son. Greg happily slept on that hospital bench in Room 18 every other night so that I could go home and get rest. Although the routine was exhausting. The time with Ethan was precious. “Precious” is THE ADJECTIVE that Greg has for Ethan. And it fits him perfect. Greg hated when Ethan had head IV’s. Because by the time they finished securing them with all that white tape, Greg felt like Ethan looked like he had a bow in his hair. . . and Ethan was not to have bows in his hair!

It is also during that time that the hospital staff became Ethan’s second family. He had many nurses who adored him and took care of him regularly. In time I began to think of them as second moms. However, they preferred to be referred to as Ethan, aka: Skiddy’s girlfriends. No one could take care of Ethan, or even just be in his room, without referring to those eyes of his. He was “all business” with those eyes. You knew how his little body was doing by those eyes. You knew if he cared about you with those eyes. He would stare into you as though he was reading your thoughts and knew your soul. Ethan would also give you the dirtiest look in the world if you were not making him happy. The furrow of his brow was priceless. His expressions captured our hearts. He had to use those eyes, for he had no voice with the trache in.

Greg, Ethan, and I soon learned we were priviledged to be involved with some of the most elite, dedicated professionals of their field. Our favorite nurses, respiratory therapists, and practitioners will ALWAYS hold a tender place our heart. They treated Ethan and our family with the upmost respect. And loved our child as their own. I loved them trying to give him Fohawks to no avail. That little bit of curl would eventually win and the Mohawk would turn into a curly cue. Then there were endless hours of patting his diaper, holding in his paci, and rubbing his head to comfort him, when we were not there, or when I had to walk away for a moment cause I could no longer watch what he was enduring.

I can’t tell you how many times we would see staff members walking on to the unit. They would walk by Ethan’s room and peek in, even before they checked in for the day. And they could not hide their expressions. There were smiles when he looked good, and very little meds or machines were in his room. And you would see the heads drop and pain in their eyes if they saw he was not in as good of a place as when they left him last. You had us all hooked Son. Everyone could see how amazing you are. Everyone was in the cheering section!

Finally we got the news, we were going home on April 6. Actually it was my birthday, and I had threatened the staff with their lives that we better be home by then. And home we arrived to balloons and d├ęcor adorning are yard. We were so happy to have you home. . . even at 3am the next morning when I hadn’t even climbed in bed yet. We had already driven back to the hospital to get a NG feeding tube put in because his other one clogged and I was still putting all of your medical equipment and paperwork away. Not to mention trying not to have a heart attack when the monitors would beep.

However, just three days later we returned to the hospital. His lungs were just a little to wet and his diuretics needed a little more balancing. As we were getting readmitted to the unit two nurses were arguing over who got to take care of Ethan that night. It brought joy to my heart. He spent another two weeks getting everything worked out. And then we were home, for the best month of our lives. All four children under one roof. It was difficult to say the least, but with everyone’s continued love and support we survived and had many precious and tender moments with Ethan and the kids. Cannon was in heaven. He just wanted to love and play with all Ethan’s equipment. . . and Ethan too. I would take care of him and rock him all day long. Then Greg would come in from work in the afternoon and taking over the rocking job while I attempted to get stuff done.

One tradition I was grateful Ethan got to enjoy was shower time. Sorry to embarrass you Greg. But I know it was your favorite. After being home just over two weeks, Ethan got his trache out. His vocal chords were no longer paralyzed. He was finally in the clear to take a shower with Dad. Greg loved to get handed all of our babies in the shower. He would wash them and sing to them like it was the best thing in the world. Ethan, like our other children, absolutely loved it! Greg’s shower song is Outkast’s “So Fresh, So Clean”. Greg loved to help in all of Ethan’s care. He has always said he was going to spoil Ethan for being such a good baby and such a fighter. He did spoil him. With the best kind of spoiling. . . LOVE and ATTENTION. Ethan Greg Skidmore, you are named after a great man, a gentle giant, and your biggest fan. And Greg is so proud you share his name. I could not have lived these last 6 months without your dad either. Thank you babe.

We were also able to enjoy our other kids during that month because my mom had come to live with us in early May. We now had a third rocking partner. Grandma Stapley did as she always did. She rocked you constantly, held you tight, and played dress up with you!

Round two began June 2. Ethan looked so good going into surgery that day. He was smiling and being playful in the pre-op. Those were tender moments. After a long embrace he was wheeled off to the OR again for his second open heart surgery. He looked fabulous a week after surgery. He did have small pleural effusions and chest tubes. But other than that he was smiling, interacting, and playing with toys. I was so relieved. I proclaimed we had made it. . . We had made it through the worst. Little did I know it was the beginning of the end. Ethan began a rollercoaster ride that he could not get off of. His little body fought long, and hard. The prayers of family and friends and the tender loving of the staff helped us get through these times.

At almost two months into the journey we thought he was finally on the road to recovery. Then another slip down hill. He was reintubated and went into full fledged heart failure. The word we never thought we would hear so soon in the journey was being mentioned: Transplant (which would mean moving out of state). The pain sunk in that our little Ethan had so much more to endure. Greg and I were overwhelmed but quickly rallied again. As did the staff at St. Joseph’s. We were determined to be there for Ethan, but realized the journey ahead was still long. We appreciated our children, and how understanding they were to Ethan’s needs. But Greg and I realized we needed to give them a little more time and attention. We quickly settled into our new routine. We were in it for the long haul. Grandma Skidmore was going to be with Ethan Tuesdays and Thursdays so I could be home with the kids. During this transition I was overwhelmed with emotions. Not being there for every little thing with Ethan and the decisions about his care was hard. But it made my time with him that much sweeter when I was there.

My last night with Ethan I held him, sang to him, and gave him a bath. I got a little smirk out of him. And even better. I got the classic glare as I was washing his hair! Because that night I chose not just to do the sponge bath on his hair. But get his hair wet and lather his hair real well, til bubbles formed. Then I rinsed it out. Oh, that was a tender moment.

I would like to read a quote that Boyd K. Packer, of the quorum of the twelve apostles of our church, wrote to my cousin who has been struggling with her own child’s health.

"Remember this! The line 'And they lived happily ever after' is never written in the second act of a play. That line belongs in the third act, when the mysteries are solved and everything is put right..."Until you have a broad perspective of the eternal nature of the plan, you won't make much sense out of the inequities in life. Some are born with so little and others with so much. Some are born in poverty, with handicaps, with pain, with suffering. Some experience premature death, even innocent children. There are the brutal, unforgiving forces of nature and the brutality of man to man."Do not suppose that God willfully causes that which, for His own purposes, he permits. When you know the plan and the purpose of it all, even these things will manifest a loving Father in Heaven.”

I know that physical causes made Ethan’s heart spiral downward that night. But I also know a loving Heavenly Father and Ethan chose the time to have him exit this world. Swiftly and peacefully he entered the third act of his play. He has reached his happily ever after. We looked forward to being with him again. But for now Greg and I are just grateful for the six months he fought so hard, so that we could love and enjoy him.

I would like to close with a poem my aunt Kathy had:

Small as a jewel box is your casket.
And you, our smallest jewel,
Are treasured up to God within it.

We did not give you willingly
Nor did he snatch you from us.
I rather think the choosing was your own.

Or perhaps, we had planned together
In that other shining world
That you would come and make this hasty call,
Then hurry on

That you might light the lanterns on the way
So we could find the footing.
But we had forgotten.

I think you too, had forgot. . . for one brief time. . .
For you tried so hard,
But God remembered.

Go then, our little jewel,
Go back to God.
Tell Him we feel no bitterness at all,
With our own hands we offer you.

We have a treasure laid up in Heaven,
And where our treasure lies,
Our hearts will follow.

You are our surety laid up with God.
And we will come to you.
We will, we will.

Thank you for all of your love and support. And thank you Ethan. I love you.
Greg's Talk
Good morning Friends and Family, I am so glad to see all you here and am grateful for your sacrifice to come pay tribute to the life our son Ethan. I say our son because I fill he was as much a part your lives as he was a part of ours. Let me explain:

I can’t tell you how grateful I am for my lovely wife to be so diligent in keeping you all updated on Ethan’s journey through her blog. I would find myself reading its pages to see how my son was doing through the eyes of his caring mother.

Even though Ethan spent most of his life in a hospital bed, I can’t help but think what a great missionary he was through his story and his mother’s blog. I was amazed at the amount of hits his blog was getting and couldn’t help but think who are all these people following Ethan’s story? Through the comments left on the website, I found these people to be relatives, friends, friends of friends, and strangers. Throughout his life you all gave words of encouragement, and letting us know that Ethan was in your thoughts and prayers. I want you to know that those thoughts and prayers didn’t go unanswered. Ethan went through a lot in his little life. Two open heart surgeries, a thoracic duct ligation, intubations, tracheotomy, countless needle pricks, medicine injections, medicine withdraws, fevers, etc. I just want you to know that he could not have endured as long as he did If it wasn’t for your faith and prayers. I can tell you that I am most grateful because those were probably the best six months of my life, in-where I was touched by one of heavenly fathers most precious. His little life, while short, will have a lasting affect on mine and my families. Through his bravery, persistence and courage, He was able to touch many by the spirit. I know for myself, he has made me a better person, helping me better understand the attributes of charity, service, hope, and strengthening my faith in the gospel. He has taught me to hold close those precious tender moments we have with our children. Through his life, he has brought our family closer together. This little soul has done so much for me. There’s a quote from Joseph Smith I’d like to read:

Death is almost always traumatic. We consider the experience a pivotal point in our family’s life. We are not yet immune to pain, but we have discovered reservoirs of strength within our family that we were oblivious to before. We know that life is a mixture of bitter and sweet. But despair is never the answer; hope is. Increased compassion for others, stronger family unity, dependence upon the Lord—all can be rewarding by-products of the intense experiences surrounding the death of a loved one.

I am going to miss his big beautiful blue eyes, handsome face, and his mom’s favorite, his eyelashes. Ethan, around the hospital staff was known for his facial expressions. Because he did not have a voice for most of his life, he was great communicator through his face. He had the sweetest and most tender powtty face. The times I would see it most is when the nurses would take his temperature or listen to his chest. I’m going to miss his beautiful face. Ethan also liked to hold hands. If you put anything else in his hands he would drop it, but he was always content on holding your finger. I loved holding Ethan’s hands.

Even though it was getting hard and old going to the hospital everyday, it was without a doubt the best part of my day because it was time spent with my son Ethan.

(I would like to take this time to especially thank Ethan’s Doctors, nurses, and hospital staff. For taking good care of my boy when family was not around and making the hospital feel a home away from home as much as possible. And I can tell you Ethan was eternally grateful.)

Before my closing testimony, there’s a poem I would like to read that gives good insight on how I feel the night of Ethan’s passing from his perspective:

Guess What Mommy & Daddy?
Guess what mommy & daddy,Heaven is great.Just like you said,There's not much longer to wait.
Guess what mommy & daddy,I have a guardian angel who comes at night.I told him I wanted to go,But the times not right.
Guess what mommy & daddy,My angel came this morning.While you were still in bed,He came with a warning.
Guess what mommy & daddy,When you were finally out of sight,I told my angel,The time is just right.
Guess what mommy & daddy,When you still didn't know I was gone,My angel put his hand in mine,And I was no longer sick, I felt so happy & fine.
Guess what mommy & daddy,When the hospital called, I saw you crying from above.I saw daddy & how scared he was,And I knew how much that I was loved.
Guess what mommy & daddy,On the way to the hospital I heard you pray,Don't take him, I'm not ready yetI know you don't want God to take me away.
Guess what mommy & daddy,I saw you walk into the Hospital, and ask is he gone.I saw the look on your face when the nurse said yes!It looked like you'd never go on.
Guess what mommy & daddy,I seen you holding me tight.I kissed you good-bye with my love,And tried to tell you that I was alright.
Guess what mommy & daddy,There's no more pain,You can go on with your life,And not feel so drained.
Guess what mommy & daddy,I'll watch you all your days through.And be like your guardian angel,Just because, I LOVE YOU!!
Joseph Smith Said the following concerning infants:
“We have again the warning voice sounded in our midst, which shows the uncertainty of human life; and in my leisure moments I have meditated upon the subject, and asked the question, why it is that infants, innocent children, are taken away from us, especially those that seem to be the most intelligent and interesting. The Lord takes many away, even in infancy, that they may escape the envy of man, and the sorrows and evils of this present world; they were too pure, too lovely, to live on earth; therefore, if rightly considered, instead of mourning we have reason to rejoice as they are delivered from evil, and we shall soon have them again. …
Dad's Testimony
Grandma Skidmore's Talk

· Some of the most precious & important prayers ever given are the prayers of a Mother for her child. I have used this important blessing many times in my life. Maybe, the second most precious prayer is the one offered by a Grandmother. There is not a day goes by that I don’t pray for blessings over my children, and grandchildren. The Savior said: Pray always & I will pour my spirit upon you, and great shall be your blessings.

· In the last 6 months I have never prayed harder in my whole life. I love Pres. David O McKay’s definition of prayer: “ Prayer is more than words- Prayer is the yearning of a loving heart in tune with the infinite. It is a message of the soul sent directly to a living Father – the language is not mere words. But Humble thought”

· Even before baby Ethan was born I prayed that miracles would happen and he could be born with a whole heart. A miracle happened - but it didn’t change Ethan’s heart - it changed my heart and hundreds of others who knew or read of his roller coaster ride of joys & sorrows in his battle for life. So many prayers were offered in his and Greg & Heidi’s behalf. Our family will be eternally grateful.

· One of my favorite stories in the Book of Mormon is when the resurrected Savior asks that: the Nephite little children be brought unto him:

· “And..when they had knelt upon the ground,…he himself also knelt..: and behold he prayed unto the Father and the things which he prayed cannot be written,.. so great and marvelous were the things.. And when Jesus had made an end of praying…he arose and wept…and he took their little children, one by one, and blessed them, and again prayed unto the Father for them.

· And Jesus said unto them: Behold your little ones. And they cast their eyes toward heaven, and they saw the heavens open, and they saw angels descending it were in a midst of fire: and they came down and encircled those little ones about, and they were encircled about with fire: and the angels did minister into them” (3 Nephi 17)

· I know Ethan had Angels watching over him. Elder Holland said: “In times of special need Heavenly Father sends angels, divine messengers, to bless his children, to reassure them that heaven is always very close and that His help is always very near. Seen or Unseen they are always near.

· Ethan not only had heavenly angels - but also earthly ones. His mother and father watched over him day and night at the hospital. Family, friends gave loving service and doctors & nurses would comfort him in his struggle for life.

· It was my special time to spend with Ethan every Tues.& Thurs. It would take almost 40 minutes to get to St Joe’s Hospital from my house. Plenty of time to pray in my heart asking: “How could I help bless Ethan today?” It was a week ago last Thurs. I had a most wonderful day with him.

· I always would have to check in with the receptionist before I could go back to the ICU. I would tell her,” today is my Date Day with Ethan.” She would give me my badge that said, “Visitor” and I would secretly think (I AM NOT JUST A VISITOR I AM ETHANS GRANDMOTHER!) As I’m walking down the hall I descreetly put the visitor badge in my purse.

· When I entered into Ethans room the first thing I did was walk to the crib to see if he was awake. There he was just wide eyed looking around the room taking it all in. I quickly looked at the monitor to see how all his numbers were doing. His heat rate, oxygen levels, and his temperature. I talked to him and said: “ pretty good Ethan but we can do better”. I was glad to see they had changed his Art line to his foot so I could hold his little hand again. One of my favorite things to do. What a wonderful morning we had as I shared with him some of his musical toys & beanie babies. I even got to sing to him my special Grandma song of: “ I love you a Bushel & a Peck.” Although, I didn’t quite get to finish it because the nurse walked in and I didn’t want her to think I was too crazy.

· Heidi then text me to look and see if his bottom teeth had broken through and the nurse said they hadn’t. We changed all his bedding and I was excited to use the little blue quilt with stars on it that my sister and I had made for him. He looked beautiful with all the color.around him. I loved how Patricia, the nurse took care of him that day. In the afternoon she tried to keep everyone out of the room so he could sleep.

· About 4 O’clock Greg came to take over but I didn’t want to leave. The nurse discovered the tooth had broken through and we were celebrating . Greg asked me if I would like to hold him ( as Heidi had held him the day before) I said: I’d love to.
· It had been a long time since I had been able to hold him. He slept in my arms for over an hour.
· Little did I know what a wonderful gift that was for me. Before I went to bed that night I knelt down on my knees to pray & thank Heavenly Father for the tender mercies of the day.
· I will never forget the special spirit that was there. What a blessing it was for me to spend this time with Ethan!
· Pres. Monson has said: The passport to peace is prayer. The feelings of the heart humbly expressed provide the peace we seek.
· How thankful I am for the gospel in my life. For the Atoning sacrifice of my Savior & that through him we may all have eternal life. I know I will see Ethan again. I love him. In the name of Jesus Christ , Amen.

Monday, August 31, 2009


When Greg and I are busy, we do well. However the middle of the nights seem to get to us. Sleep is still not our friend. Last night I lay awake at 3am, tears pouring down my cheeks, just wanting to love on Ethan. These are selfish, yet justifiable feelings. I want him here for me. But he would be suffering if he were still here. I am just grateful the Lord answered my prayer. I offered to do WHATEVER it took if Ethan was meant to stay in this life and recieve a transplant. I then said that if his life were to be continual pain and suffering that I was at peace with him leaving this mortality. I simply asked not to have to make the decision! I asked if the second scenario was to be Ethan's, that he pass quickly and peacefully so that I would know it was Thy will. My chest burned during this prayer. I was scared. . . Which scenario was the Lord answering?
Less than 48 hours later I learned. Greg had just left for the night. Ethan was having a wonderful day. Something physical started causing him to have issues. He began retaining CO2 shortly after midnight. As they were adjusting his ventilator settings, his heart went into an arrythmia and he was soon gone. They worked on him for a few minutes as his heart rate was dropping. But our request was not to put him through a long full code if something like this were to arise. He had been through too much already, and he would not recieve a transplant if he had neuro damage. The doctor said a full, long code would not have made a difference. He made his quick, peaceful exit. A prayer was distinctly answered that night. And as my heart aches for Ethan, I have to remind myself of the tender mercies of the Lord, and be grateful he is no longer suffering. Now Greg and I must learn a new normal, a new way of going on in life. It is not easy. But time will heal.
Thanks for the continued love and support-
PS: I will have the funeral pics soon and post them!

Thursday, August 27, 2009

Ethan's Day

Although surreal, it was a wonderful day. We felt honored that so many loved ones came to share in this sacred occasion with us. I will write and post more soon.


Friday, August 21, 2009

Funeral Plans

We have decided to hold a funeral service for Ethan the Brave. It will be Thursday, August 27th @ 10am. There will be a viewing beginning at 9am. It will be located at 7752 E. McDowell Rd, Mesa, AZ 85207. It is located on McDowell Rd, approximately 1 mile east of Power Rd.

Thank you so much for sharing his journey with us. We have read and re-read all of your kind comments. They make us feel so appreciative to know our son has touched the lives of many.

*We will be setting up a fund tomorrow in Ethan's name for those of you who have asked to be able to donate for Ethan, and the fight of congenital heart disease, in lieu of flowers.

Ethan's Has Returned Home

It is with great sorrow that I must announce that Ethan Greg Skidmore, aka: my hero, passed awayed at 1 am on August 21st. Ethan had a wonderful day and had made good progress. Daddy gave him his signature goodnight kiss at 11:30 pm. He was well and peaceful. Unfortunately after midnight his battered heart decided it could not go on. He is no longer suffering. We can't wait to be with him again, and we know we will. For now we have so much gratitude for his journey. We are better because of Ethan. He is the ultimate blessing along with our other 3 beautiful children. We are also grateful for the gospel of Jesus Christ and it teachings, especially at this time.
Thank you for ALL of your LOVE and SUPPORT-
Greg and Heidi

Wednesday, August 19, 2009

Spoke too soon

So I posted that Tuesday was uneventful. And it was, but by 1am Wednesday things had changed. They had increased his nisiritide for a second time and he wasn't having it. He vasodialted (blood was hanging out in his arms and legs more) thus his glenn circulation wasn't getting good enough blood flow. They did a blood gas and could tell he was in distress even though he wasn't showing it. He was just lethargic and not responding to their ususal torture tactics. They turned off the nisiritide and he began to turn around.

Greg and I both slept at home last night. Greg had left Ethan around 10pm and said he looked good (that was before they increased his med). So at 3am my phone rang. I flew up to answer it. And yes, I can't go to bed at my own home with out having my cell and home phone right next to me. It was a better conversation that it could have been. . . but it still started with "Heidi, this is Dr. Underwood. About 1am. . ." and she proceeds to tell the story. We talked for quite a while. She insisted I didn't need to come. I thought it would be better if I tried to get some more sleep and come in after I got my kids off. I was wrong. I couldn't sleep and I was anxious to get my kids off. And when I got here he was clinically fine, but still looked crappy. Plus they had to sedate him to do another new art line. So as you can guess. . . I had a breakdown.

The docs and nurses rallied around and apologized and said don't give up on Ethan (same pep talk my wonderful husband gives me when I am losing it) . He has been slowly but surely progresssing. They said that last nights event was completely their fault. They shouldn't have increased the nesiritide that much. They knew it could cause that effect. They said it was not a significant setback and he was looking really good (not). However, within a few hours he did start looking better and by this evening he was looking great. I sat and played with him and he interacted with me so well.

Ethan was grabbing at things, chewing on his thumb (he will for sure have his 2 bottom teeth before Friday), and back to giving dirty looks to the nurses every time they assess him and push on him. That's my boy! He is known for the dirty looks he gives them. He continues to show so much expression through those beautiful slate blue eyes of his. I love this little boy, I just have such a hard time watching him struggle. I can handle all the swelling and issues in the world if he is just interacting and acting "himself".

Tuesday, August 18, 2009

6 Months Old!

Today there was not much action. That is a good thing for Ethan. Grandma was with him and then Dad! There is not much to report. He did get his new (larger sized) trache put in. So no more snoring and baby noises coming from Ethan. This is a good thing though. His air leak was so bad that his ventilator was ALWAYS alarming if his head wasn't in the best position. Even Ethan was getting irritated with the noise. The only real change is they decided to go up on his nesiritde drip to maximize heart & kidney function (aka make him pee more). He is peeing really well, but he needs an extra kick in the diaper. At the rate he is going he will still be puffy at his first birthday. . . Which reminds me. . . Happy 6 Months Old to Ethan!!! (hope the next 6 months go more in your favor son).
I had a good day playing mom at home. And even got out in the evening thx to some friends who came and took over for a few hours.
Thanks for the continued love and prayers-

Monday, August 17, 2009


It was another good day for Ethan. Although he looks grumpy in this photo, he is not. He has been very comfortable and content today. I LOVED holding him, it has been 2 weeks ya know! His vital signs were very good today and he even looks a wee bit skinnier! Definately moving in the right direction. His fevers have been up and down though. . . Oh how I wish they would just go away! I am REALLY trying to get a better attitude and take it day by day. My husband is so much better at those things than me. Greg gave the kiddos back to school blessings Sunday morning and he gave me a blessing of comfort since I have been a wreck lately. I am very grateful for him and his quiet, confident faith. I am also very greatful for Ethan's progress. I am learning to love babysteps.
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