The Crazy Skids

My Heart Is Full, Ethan's Run 2011

2011-02-27T19:23:00.000-08:00

Ethan's Run 2011 was a WONDERFUL day! We were able to raise $10,000 to donate to families battling CHD's. I can't believe the generosity of so many. The money raised was made possible by runners, walkers, children playing, people eating a yummy pancake breakfast, from generous donations, sponsors,an eagle scout, and from the MANY wonderful volunteers who helped plan and carry out the event. Thank you sooooooo much!
I had to keep my sunglasses on the whole time. . . I didn't want anyone to see the tears that kept creeping up everytime I saw someone walk by with a shirt dedicated to a CHD warrior and/or angel. At one point I looked over at the kids zone, and all the fun that was occurring there, and I whispered "Happy Birthday" to Ethan. What a beautiful day to celebrate his life, to increase CHD awareness, and to raise funds for a great cause. I was also very impressed with the class of athletes participating in the event. There is a picture of the 1/2 Marathon overall male winner. He and his brother finished in 1hr and 18 min. Wow! Again, thank you to all who came out!

ABC 15 NewsCovering Ethan and the Event

2011-02-04T12:07:00.001-08:00

So we may not have careers in TV, but anything for CHD awareness!

Jakey's Blankies

2011-01-28T22:11:00.000-08:00

If you have time, please check out my Friend Liz Dennison's blog. It's under "Angel Jake". He lost his HLHS battle right before Ethan was born. She gave Ethan one of the super soft, comfy blankets she started making for heart families. She is doing a drive to raise money for more special blankies to give to more special babies!!

2nd Annual Ethan's Run: Hope for Heart Defects

2010-12-31T08:42:00.000-08:00

The Event is back! It is Saturday February 12, 2011. 1/2 Marathon, 10K, Fun Run, Pancake Breakfast and Kids Zone. There is something for everyone!

Details

Kids Zone (bigger and better) 2 jump houses, an inflatable game, rock wall, face painting, and cotton candy. Children 4 and older will be $5 this year and that includes both the Fun Run and unlimited Kids Zone. All CHD kids are free (just show us your zipper).

Pancake Breakfast $5 or $20 per family. It will be provided by a scouting organization and proceeds go to Ethan's Run

Fun Run is 1.3 miles. We encourage friends and family of heart warriors to band together to represent thier loved one.

10K is the same route as last year and chip timed!

1/2 Marathon goes through Las Sendas then out to McDowell road, around north east Mesa, and finishes back in Las Sendas. This 1/2M is also chip timed and in process of certification.

Please go to www.ethansrunaz.com or active.com to register and get more information.

Or email me with any questions

There is also an Ethan's Run CALIFORNIA

My dear friend is putting it on in Menifee, CA April 30, 2011* (10k and fun run)

You can register at active.com or via http://www.ethansrunca.com/

Please help spread the word and raise CHD awareness!

Sometimes I question myself for putting on this event b/c of the time it takes, not only my families part, but all the volunteers as well. Then I get word of another little precious CHD baby (Ella) who loses her life to a complex defect and I am reminded of the purpose, the cause, and my little Ethan. . . We are grateful we can put on this event. And THANK YOU to all those who make it possible!

Family Pictures

2010-11-11T17:48:00.000-08:00

My mom always tells me our family pictures are so boring and lack color. . . So here you go mom. This one was for you. Color, color, color! We had so much fun taking them. There are too many good pictures. I have 250 to choose from and I just can't decide. I LOVE them all, but I also want to have money in the bank for Christmas! We just wish Ethan was in the pictures with us. Family pictures will never be the same. Thanks for putting up with us Melissa!

October Fun

2010-10-31T12:28:00.000-07:00

Life has been crazy busy. . . Fall sports, fun parties, and working way too much! Here is a peak at our month. It started off w/ Crazy Cannon turning 5! I can't believe he is five. Anyone who knows Cannon knows there is never a dull moment with him. He is either up to something sneaky, or the center of attention! This kid is hilarious and loves to keep us on our toes. And our poor puppy. . . he is often the culprit of Cannons antics! We rode trains and the carousel at McCormick train park and then had a picnic and games. I also have an annual Halloween party. Lots of yummy eats and fun treats. The pumpkin carving contest has become increasingly competitive each year. I may need to stop that part of the party to keep love and harmony within the family :)

Ethan Slide Show

2010-08-21T17:22:00.000-07:00

Here is a very rough draft of a video I was trying to do with some of Ethan's pics (since I hate scrapbooking). We miss him so much. I cannot find a picture of him smiling big! He HATED the camera. Every time I lifted it up he would scowl. I don't blame him. Machines were all too much a part of his life. He always just wanted a finger to hold or a face to look at. Love you son... I can't believe you have been gone 1 year. . .

This picture slideshow personalized with Smilebox

Gifts

2010-07-30T20:36:00.000-07:00

What were you doing this day last year? Was it a day I got to hold you? Was it the last day you were happy and smiling? I wondered. I did it... I shouldn't have. I pulled it off the shelf. Two hours later, thousands of tears, a box of kleenex, and a wicked headache the next morning. Does that make the phrase "miss you so bad it hurts" true? More than you know. It's been ALMOST a year... yet still so tangible. You are still the front and center of every thought. EVERYTHING reminds me of you. I miss you son.

I must thank those kind soles who have given me (our family) so many kind gestures. Here are two of the newest.

Greg's cousins had this portrait painted of Ethan. My snap shot does not do it justice. It's AMAZING. It captures the day, one of his best, the embrace, his eyes... It's perfect. Thanks Wrights

This one is so meaningful. One of my dearest friends had this CD signed by Paul Cardall. He is an LDS musician/pianist. He is a single ventricle (right) who recently had his first heart transplant. He supports CHD's and the children they effect so much. Thanks Cullimores.

The third gift was a letter and picture from my aunt. Her daughter (my cousin Melanie) passed away after a 20 month struggle w/ life. Melanie would be 25 years old now. It is a total different situation, but in the end her lungs are what took her. I have since cried many tears of joy and sorrow w/ my aunt. She has given me hope. I hate the bond that ties us, but LOVE that I have someone to share it with, someone who has journeyed this road and can give me guidance. Thanks Kathy.

Summer Time. . .

2010-07-18T16:49:00.000-07:00

We have had a fabulous summer thus far. . . (but truthfully I am ready for school to start. What?! There is another month!) We were busy w/ so many fun activities in June. So July has been our "true summer". . . trips, hikes, card games, the lake, swimming, ball games, movies, and too much TV. The highlight so far has been our trip to Salt Lake City for my amazing Grandmother's 90th birthday. She is awsome and healthy as a horse (and did I mention her secret to success is a Dr. Pepper a day!) And the weather was in the 80's. Next venture: the Grand Canyon and Skidmore Reunion.

the skid kids

2010-06-16T12:23:00.000-07:00

So it was this week last year that Ethan tumbled down hill. It was approximately 10 days after his second open heart surgery. He was doing so well. Exceeding everyones expectations (since the Glenn requires good lungs, which he didn't have. I look back and just have to think it was a tender mercy. His lungs held strong as long as they could. Gave us some great days with him! But ya all know how the story went. I actually hadn't had a tear fest in almost a month, but this week opened some flood gates. Good thing I have these crazy skid kids to keep me busy and moving forward. Cannon's latest "Efin" comment: "How did Heavenly Father take him all the way up to heaven, you know, with out any airplanes hitting him and space stuff?"

Gage won an award for a poem he did about dogs (he wants one so bad).

Cannon had his end of year prescl grad. He has one more year and was so bummed he didn't get to officially graduate and wear "the High School Musical graduation outfits." He will also miss Sofia, a big Kindergardner now!

Welcoming in Summer!

The Verdict Is In

2010-04-30T10:59:00.000-07:00

My kids hearts are healthy and whole! I was so happy to have Jon do some of the echos. He did many of Ethan's! After hours of echos, ekg tests, and listening to their chests, it was determined they never need to have any more cardiac follow up. Once again I forgot my camera, but the important thing is their hearts are perfect! The only small little thing is they said my daughters Aorta is a little large but not to worry about it. I said "you don't know who you are talking to!" (it was a new NP that told me this). I said "go back with the doctors and MAKE SURE there is nothing to worry about". (Because I have every reason to be worried about small stuff after losing a child who had big stuff). Dr Pophal did a double check and came in to re-assure me she is fine. It is on the larger side of normal which just means it grew that way. There is nothing that would cause it to be large as far as the heart not functioning correctly. Phew!!!

America's Favorite Past Time

2010-04-26T21:02:00.000-07:00

"To become a winner in the race for eternal life requires effort—constant work, striving, and enduring well with God’s help. But the key is that we must take it just one step at a time." Marvin J. Ashton

This was a great reminder to read tonight. Every night we say family prayers, which includes the kids praying for a long list of heart kiddos (and of course Cannon still prays for Ethan to get resurrected soon). After tucking them in I went to check on Miracle Mason. He is suffering from rejection after his heart transplant but he, and his mommy, continue to fight. She had posted the above quote on today's update.

Lately I have been shedding many tears for my little man. I miss him so. Tomorrow will be 8 months since we laid his beautiful body in that beautiful casket. There are several songs that get played on the radio that I would hear on my long drive to and from St. Joe's. It seems like they are getting played alot lately. It has brought back many of the emotions of last year. The incredible ups and downs. It has refreshed the beauty and sorrow of that summer. The ultimate miracle is the answer and peace I received just prior to his passing. I have to remind myself of that often. It was so sweet, so true. However I still shed tears and my heart still aches.

I do know that the Lord allows sorrow and pain so that we can truly appreciate the joy. . .

My latest love is playing baseball in the backyard w/ the other three kiddos. The boys especially, are obsessed. We conditioned their gloves tonight and wrapped them w/ rubber bands to help "shape them" better. That lasted 15 minutes. They wanted them unwrapped so they could get a few more innings in the backyard before the sun went down. Then they all watched a few innings of the D-backs game on the internet (since it was blacked out on the TV). These are the joys I appreciate a little more. They are such good kids. I love them and their passion to do everything. Enjoying them one day at a time. . . despite the craziness of life.

PS: Greg thinks I am crazy, but I am having my kiddos hearts checked this Thursday w/ Ethan's cardiologist (echos and all). Obviously they don't have anything serious, but there is something to say about peace of mind!!! Right???

Grandpa Tom

2010-03-28T17:25:00.000-07:00

Another funeral for the Skidmore household, however this one was filled with joy and peace. Grandpa Tom lived a wonderful life. He passed away at the age of 84 and was able to be reunited w/ his wife who passed just over two years ago. I can't but help be a hint jealous. . . I am pretty sure an embrace w/ Ethan was one of the things Grandpa experienced once he crossed to the other side.
I am grateful for such a great heritage. Grandpa had a very strong testimony of the gospel, loved life, and gave our family some great traditions. Cannon's middle name is Thomas, like Grandpa (his real name was Donald Thomas Stapley). He refused to call Cannon by his firt name. He always called him C Thomas! Well, D Thomas, you will be missed.

What a Month!

2010-03-17T22:49:00.000-07:00

Two March Birthdays!

Ethan's Run (Feb. 20)

Disneyland (no lines on Wednesdays)and if you ask, you just might end up in the parade like we did!!! So fun.

Ethan's Birth, a year ago (Feb. 18). He came out breathing on his own & more stable than I was expecting :) So what happened. . . UGH!
Beach AND Prescott weekend pictures are yet to come! Not to mention I attempted to do the Ragnar del sol relay (but injured my knee on my first leg) and started working again. All this has been good, but exhausting. I liked being busy this month though. The end of February was so very emmotional (and still is). I miss my little man, and just pray I did EVERYTHING possible to make him feel loved while he was here. Being ADD, OCD, CRAZY, A NURSE (only to him), AND HIS MOTHER was a hard combo to keep balanced. Nurse West once gave me a long look and sigh. She then said "I can't decide what I like more, the mom who wants to know everything, or the mom who is tuned out & sits in the corner"! Hmmmm. None the less. I love all my kids & cherish the thoughts I have of the day we are all together again.

We Did It. . . $10,000 to help CHD families!

2010-02-23T13:24:00.000-08:00

Ethan's Run was a huge success thanks to many of YOU! The weather held out just long enough and the main events were able to take place. The 10K course was awsome! It was hard and challenging. . . and shockingly no complaints about it. Most people said they loved the challenge and there are no other 10K like it in the valley. I was afraid no one would come back after they ran it :)

The fun run was great. I LOVED all the kiddos running and scooting their hearts out! There was a HUGE heart family and friend turn out too. I love seeing everyone, just wished I had actually had time to talk to you all. I love you guys! And I have loved receiving all your pictures and comments!

I also want to THANK all those that sacrificed so much time to help. The volunteers and support was awsome. I am humbled by it to tell you the truth!

I ran the 10K (which didn't leave me much time to visit) but I did it for Ethan. I could not put on an event in honor of my son, call it Ethan's Run, and not run it!

Now starts the PAY IT FORWARD part. We raised $10,000! After I finish up with post race details I will start working on the details with the Congenital Heart Foundation on how to distribute the funds to benefit those families struggling with complicated battles!

There will definately be an Ethan's Run: Hope for Heart Defects 2011!

I have tons of new pictures to still go through! I will post more later. This week I need to finish up race stuff and, oh maybe, tend to my neglected house.

Love- Heidi

Any Picture Takers???

2010-02-15T12:52:00.000-08:00

Does anyone have a decent camera that would like to SNAP PICTURES at Ethan's Run???
I would like some candid shots of the event as a whole. You do not need to take a picture of everything. . . I just want to make sure and capture some memories. . . Any takers???

MapMyRun.com | View Ethan's Route #4 -- Final in Mesa, Arizona

2010-02-10T20:00:00.001-08:00

MapMyRun.com | View Ethan's Route #4 -- Final in Mesa, Arizona

Posted using ShareThis

You can view the 10K route for Ethan's Run by clicking the link above.

***Boulder Mountain Park is the base camp for the whole event. Please make note that the road "Red Mountain" that Boulder Mtn Park is located on, will be closed to through traffic starting at 8:15 am. The 10K and fun run will be starting and finishing on this road, so traffic will be closed. If you need to arrive after 8:15, then plan to park a half mile or more away! We will have a few golf carts for people to get shuttled into the park.

10K starts at 8:30am
Fun/run starts at 8:40

Ethan's Run, Final Countdown

2010-02-04T20:31:00.001-08:00

The FINAL COUNTDOWN is on for ETHAN'S RUN: HOPE FOR HEART DEFECTS! Please help spread the word. It has come together very well. The event is in the community of Las Sendas in NE Mesa. Please enter from Power & Thomas Rd. and plan on arriving by 8 (so not to cut it too close). I have been very blessed to have two boy scounts want to help with Ethan's Run for their Eagle Projects. . . I could not be more grateful. And quite frankly, my mini stress breakdowns as of late might have been a full blown breakdown if they hadn't come along. Thanks Max & Sam.

If you didn't notice, the fun/run is now ONLY A 1 MILE. Sorry if you were planning on a two miler, but I just couldn't make it work without messing up the 10K. There will be complimentary snacks, drinks, and messages for the 10K runners. The fun zone (8am to 11am) is at the park w/ free bounce houses, and tons of play equipment. Tropical Smoothie will be there, and the newest edition is a PANCAKE BREAKFAST for purchase! And of course, CUTE SHIRTS to all registrants. There is day of registration w/ cash, but shirts are not guaranteed. To pre-register go to my button on the side and it will connect you to online reg! Thanks to all the sponsors and those who are helping to make this a great event! If you can't make it, just try to always spread Congenital Heart Defect Awareness! It is the number one birth defect and the number one cause of infant death from birth defects.
Cannon asks everyday if it is "Efin's Run yet?" Almost buddy, almost!

15 Grandkids Nine & Under

2010-01-27T20:27:00.000-08:00

What could be more fun than seeing 15 grandkids running and screaming together at Grandma's house? Maybe just Grandma and Grandpa's faces! We are lucky enough to have lots of fun cousins to play with. These are the pics we took at New Years. Thanks Sara. . . they are so fun. However, could you please photoshop the bags on my eyes? They are still terrible. I think Ethan pushed them to the point of NO RETURN! All the sleepless nights and tears were worth it(like they're over). Just wish grandkid number 16 was running around with the others. . .

Cannon is my angel on Earth!

2010-01-25T20:11:00.000-08:00

Yes, I used Cannon and angel in the same sentence. He has been more joy than mischief lately. And even though Ethan has been gone over 5 months. . . Cannon continues to be his biggest fan.
My sister-in-law asked me if I was writing down the sweet things Cannon has been saying. And I am guilty. I have not. So here are just a few glimpses.

Cannon ALWAYS blesses Ethan when it is his turn to pray. Sometimes he adds "bless Ethan to be resurrected". I without a doubt know I will see Ethan again on the other side. I also know one day he (we all) will be resurrected and his physical state will be made perfect. My older kids grasp that the timing of the second coming of Christ and resurrection is unknown (and far off). Cannon doesn't get it, although I have explained it to him 3-4 times a week since Ethan's passing. Tonight during prayers Cannon prayed: "Bless Ethan to come back alive fast. . .it is taking too long."

A few weeks ago my friend returned a cradle I had lended her. We used it for the first week or so Ethan was home. Even though he was a little baby, it wasn't working out, because he was a little baby with way too many tubes and wires attached to him and I just had no room to "work" when I was taking care of him and giving meds, feeds, suctioning, diapers, dressing changes, etc...). So we put up the crib and eventually lent the cradle out. Cannon and I walked into the garage after she returned it and there it was. . . Cannon gasped with excitement, put his hands on his cheeks and shouted (with the biggest grin ever) "Is that for Ethan? Is he coming back ALIVE? Can we put it in my room? I will take good care of him and help him when he wakes up at night!"

And as you can imagine he was quite disappointed when I told him the situation. But none the less he went on to talk about Ethan for the next 2 days straight. . . Including: "Mom, you need to have another baby boy so when Ethan comes alive he will have a buddy to play with like I have Gage."

And on the note of Gage. . . I heard Gage saying he was scared after we tucked them in tonight. Cannon and Gage share a room w/ two twin beds. A few minutes later I heard Cannon tell Gage he could come sleep with him. I thought it was sweet, but didn't think much more of the comment. This is how I found them when I went to check on them an hour later.

As I have pondered Cannon's change in demeanor, I can't help but wonder if he has changed, or have I just changed the way I view and love him. I must thank Ethan for those lessons. Learned the hard way, but none the less, learned (and hopefully never to forget).

XOXOXO

Neighbors & Good Times

2010-01-18T20:21:00.000-08:00

So this post is a little late. I have been wanting to put up my Christmas card because I ran out this year. I thought I ordered plenty. . . but it turns out this year not only brought us our Ethan, but it also brought us a whole lot of new friends and loved ones. I wish I could tell you all the special thoughts and feelings I have for ALL of our old and new friends. I would like to say I could go on praising them for hours, but the truth is that my feelings are so tender and so full of gratitude for all of them that I still just break down in tears everytime I think about it. The feelings are too overwhelming to describe (it might also be difficult to express because English/writing was not my best subject)!

Today I had a chance to catch up with Melodie (Scarlett's mom). She is Super Heart Mom! Scarlett was Ethan's first neighbor in the PCTICU. She was born one day before him with Tetralogy of Fallot. She is now almost a year old, starting to walk, and has the most beautiful eyes and smile. Melodie has become dedicated to the cause. She connects more heart moms than anyone I know. She continues to support CHD families whether their child is alive, or has earned its angel wings. And she is a busy full time working mom with lots of other stuff to worry about too, but she still cares about us! We had so many good "neighbors" on the unit. I love them all. And they are part of why I want to put on Ethan's Run. To continue to support the cause.

Ethan is 11 months old today, and 5 months gone. . .

On a lighter note, Greg planned a fun trip for us this past week. Realizing the toll this last year had taken on us (notice my card... still looks like I haven't slept in a year). . . he planned a get-a-way. We went on a 7 day cruise to MEXICO. Oh, it was fun! We had a blast and for the first time in I don't know how long. . . we were able to relax and let loose! Can anyone say KARAOKE, zip lines, and snorkeling. Just a few of the highlights!

By the way Brianne. . . what happens in Mexico, stays in Mexico!

Tis the Season

2009-12-27T10:28:00.000-08:00

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!

2009-12-21T20:45:00.000-08:00

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

AZ Republic Story

2009-12-07T14:16:00.000-08:00

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 azcentral.com where you can see the story and a picture of Ethan! The story is by Astrid Galven.
www.azcentral.com/community/gilbert/articles/2009/12/07/20091207mommyblogs1207.html

Ethan's Run

2009-11-26T09:02:00.000-08:00

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 www.active.com . There is interactive maps to see the 10K and get directions. Or mail in forms can be downloaded through http://www.arizonaroadracers.com/Calendar/ethans-run.pdf. You can also check out info at http://www.ellerfamilycouncil.com/ (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!

Happy Thanksgiving

2009-11-25T19:42:00.000-08:00

May you enjoy your turkey and counting all your blessings!

I know I will a little more this year. . .

Eller Heart Calendar

2009-11-20T08:41:00.000-08:00

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".

Headstone

2009-11-16T21:57:00.001-08:00

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.

Angels Among Us

2009-11-07T11:31:00.000-08:00

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. . .

W/ Ethan, hind sight is not 20/20

2009-10-28T07:33:00.000-07:00

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!

Mission Accomplished

2009-10-18T21:04:00.000-07:00

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!

My Happy Place

2009-10-08T14:13:00.000-07:00

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-
Heidi

Headstone & Tears

2009-09-25T14:55:00.000-07:00

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!

Trying to Live what I have Learned!

2009-09-20T11:44:00.000-07:00

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!

Beautiful Poem

2009-09-10T15:01:00.001-07:00

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.
Somewhere…someplace…today…
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…
Somewhere…someplace..today…
The tiniest hearts are repaired.
Somewhere…someplace…today…
A child’s growing fast…Smiling,laughing,thriving…
His mom thinks…can this last?
It’s almost easy…to forget…That anything is wrong…
Somewhere…someplace..today…
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

Funeral continued!

2009-09-02T21:18:00.000-07:00

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 :)

Love-

Heidi

The Funeral Program

2009-09-02T18:36:00.000-07:00

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 décor 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

· ETHAN THE BRAVE , MY HERO, MY PRECIOUS GRANDSON

· 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 ..as 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.

More Pics of Ethan's Day

2009-09-01T21:19:00.000-07:00

Pain

2009-08-31T07:39:00.000-07:00

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-
Heidi
PS: I will have the funeral pics soon and post them!

Ethan's Day

2009-08-27T22:11:00.000-07:00

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.

Love-

Heidi

Funeral Plans

2009-08-21T22:19:00.000-07:00

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

2009-08-21T04:00:00.000-07:00

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

Spoke too soon

2009-08-19T16:54:00.000-07:00

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".
Love-
Heidi

6 Months Old!

2009-08-18T21:57:00.000-07:00

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-
Heidi

Monday

2009-08-17T16:36:00.000-07:00

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.

A Good Day

2009-08-16T21:27:00.001-07:00

Ethan's vital signs were very good today. He is peeing well. And Daddy was able to hold him!

Waiting Game

2009-08-15T11:16:00.001-07:00

As you can see Mickey and Goofy came by. Nothing to new to report otherwise. Ethan is still a sumo; slowly but surely peeing more. He has been on the carvedilol for 2 days now. They say it will take a good week on his new meds to be fully effective. They did an echo Friday afternoon to evaluate his heart. Not much has changed. His heart rate has slowed, so they were hoping the right ventricle would have more time to fill up. But it doesn't seem to be any different. Time will tell. Unfortunately the left ventricle is still collapsing in on the right ventricle. His fever has been low or absent the last two days which has been nice. I wish I had more exciting news to post. But the waiting game continues. In the mean time we are just loving him up as best we can with him being attached to too much stuff!
Love-
Heidi
PS: Its a good thing Mickey came by again. . . Last time he did Dad was in the dog house for not taking a picture!

Great Night

2009-08-13T07:40:00.000-07:00

Ethan had a great night despite starting it off with a really high fever. He got off Dopamine and has now had one dose of carvedilol. He was peeing soooo good they had to stop his bumex drip! And he was negative last night which helped him weigh in a little lighter! Sweet. A lot of this progress is probably due to a new med they satrted yesterday called nesiritide. It helps adults with heart failure and kidney/peeing issues. They only use it in infants when they have to. It was started since it seemed to be taking so long to get off the dopamine. They wanted to try and help break the cycle. Looks like it worked. It bridged the gap to getting him on the carvedilol. Now I sit holding my breath waiting for the new drugs to work miracles! (except I have to wait from home for a day or two because I have a head cold/sore throat, yuk)

Unfortunately Ethan's initial antibody blood work (PRA)came back at 100%. That means is blood had a bad reaction to all the blood it was tested against. This means he has a high chance of rejecting a heart if he were to get a heart transplant. Yet, we kind of expected it to be high. It is common with heart babies who have had a lot of surgery and blood transfusions and there is a medical protocal to try and reduce it IF we needed too. Go Ethan. . . let the new meds work little buddy!

My "Little" Sumo

2009-08-12T12:25:00.000-07:00

Ethan got his trache yesterday. It went well. It is nice to see his face, even though it is a sumo wrestler face. They already lowered his sedation a little hoping it will increase his blood pressures. . . then they can wean the dopamine a little. So far the theory is working, except he is a bit uncomfortable. They think they have not been able to wean the dopamine because his sedation and withdrawl meds have kept him too comfy and kept his blood pressure too low. I hope we can make headway on the dopamine. I was starting to feel discouraged. I really want to get him on the carvedilol (heart failure med) to see if it will help.

And even though I hate that he is a bit uncomfortable, he looks better on less sedation. He keeps looking at Greg or I, or his nurse, and telling us a sob story (babbling)! You can even hear him a little because the doctor put in a trache that is too small and air gets past the trache to his vocal chords. The docs on the unit are going to make the ENT come back and put in a bigger size. But for now we love the air leak!

We have had a range of emotions as we have begun to research our options (if it comes to transplant). We feel so bad that Ethan has been through soooo much already and yet we are back at the drawing board. They have begun running a few tests just in case it comes to transplant, they want to have everything ready to send out. The final item will just be another cath. But we are still hopeful the heart failure meds will break the cycle and we can put off transplant for awhile and get him home. We never thought we would hear the T word this early, however all HLHS babies will eventually have to have a transplant because eventually the "half a heart" gets worn out from doing ALL the work! So its not a completely new concept to us.

A wonderful nurse practitioner on the unit came in last week and told us she had a dream with Ethan in it. She said she has been doing this 15 years and has dreamed about procedures and mishaps, but never specifically about one of her patients. She said Ethan came to her in her dream and said he was going to get better. Of course I bawled like a baby! That it what I want as a mother. But my first question to her was, "Did he mention if it was going to be before or after transplant?"

He is a major fighter. But then there is a part of me that is more guarded, and as Greg calls pesimistic. I prefer to call it being a realist! I don't want to put him through anymore, and I wonder if all of this is worth it. We have decided to do as they have told us, and take it day by day. All I know is that it is nice having his sedation lowered. He is acting more like a baby. I do feel slightly guilty that I am getting joy from watching him suffer a little. I just love that he is looking to me for help, giving the pouty lip, and babbling. So cute.

No News

2009-08-09T22:12:00.000-07:00

It has been a quiet weekend. A lot of Ethan's numbers have been good. The big hold up right now is his blood pressure being on the low side. Hopefully we will be able to get off the dopamine soon. He is still the size of house, but comfy. Comfy is all that matters! Right now we are taking it day by day. The only for sure plan is to trache him this week. They don't want to do too much, so they won't go to cardiac cath this week (unless we have to). Taking it slow and hoping his heart recovers. Just grateful his kidneys have. Now I just wish they could up his diuretics to make him less puffy. . . But they don't want to push it too soon.
LOL-
Heidi
PS: We are grateful to our dedicated nurses who love and cherish Ethan. We have been able to spend a lot of time with our other kiddos this weekend. Thanks!

Ethan the Brave

2009-08-09T09:19:00.000-07:00

Someone who follows Ethan's blog came across this picture in a Friend Magazine. I absolutely love it!

Looking better

2009-08-08T13:30:00.000-07:00

Ethan is doing well today. His kidney function numbers are back into a nice range and he is peeing a little better. He is still too puffy for my liking, but expected w/ the kidney situation. His signs of infection seem to be down and his fever has stayed below 101 for the last two days (but as I write this it seems to be climbing a little)! Ethan's BNP (heart failure test) has been hanging around 3,000. That is still too high, but better than 13,000. We still have not started the second heart med. The first criteria to start it has been met: kidneys look better. But he is still on dopamine. We have to get him off that before we start the carvedilol. So digoxin is the only heart med on board right now.

Many have commented that they are lost by my last few posts. Most of those are my carepage followers. Carepages has not been sending out email alerts for all of my updates. If you are lost on the blog, or the carepage, you need to read a previous post titled "Details (TMI)". That talks about where we stand with his heart failure situation and explains more about why he keeps going down hill every time we think he is getting better.

Much love-
Heidi

Bizarre

2009-08-06T13:46:00.000-07:00

So Ethan is what one cardiologist likes to refer to as the most bizarre hypoplast left he has ever come across. And they wish they could find one similar to him in research, because then they would know what to do! Hmmmm- that makes me feel better:) I know what he means though. It was just funny to hear.

What we do know is we need to start some heart meds and get his right ventricle to be able to relax and open up more when it is filling with blood. So we are backing off on some of his lung meds and starting the heart meds: Digoxin and Carvedilol. Hopefully this cocktail will make his heart and BNP happy. We are going to tweak his antibiotics a little as well. Once we get his heart meds working and in a therapeutic range, then they will bring back the lung meds and diuretics and hopefully be able to find a happy balance. If we can find a happy balance then they want to do the heart cath on him. Dr. Cleveland said maybe we can even get him well enough to go home and thrive for awhile before we do the cath. He wants to get him in a good place so that when we do the cath we know if what we are doing is enough. If it isn't, then we can evaluate what the next step needs to be. More meds, a procedure, or transplant. But that is weeks out.

For now the focus is to get over infection, start heart meds, get kidneys recovered, and trache him. As mentioned they are also going to trache him (maybe next week). It will be much easier to manage him medically and get his lungs healthy. It will also be easier to hold him and do therapy with him so he can strenthen. Especially if we can't find that right balance for him soon and he ends up staying in the hospital for awhile. I have already asked the staff. . . they are not okay with me setting up a bouncy house outside his room for his first birthday party. . . so I said "then we better be home by then"!

Puffy

2009-08-05T19:26:00.000-07:00

Ethan is doing very well right now. I wanted to post a picture I took of him last Saturday. He looks so good! When he gets so puffy it is nice to peak at pictures of what he really looks like. Well, his sats are in the 80's. They were last night too. However, this morning he had a bad reaction to a breathing mist they gave him through the ventilator (combined w/ low blood pressure) and his sats dropped into the 60's for awhile. Oh, how I hate the many days we have had looking at 60's! He did well in the OR. They got his central line in the first try (w/ a cut down of course) and were able to remove his old broviac. The broviac has to actually be cut out.

He is very puffy today. They took away the bumex (his heavy diuretic of choice) to give his kidneys a rest, so of course he is not peeing that great. The docs actually want him puffy right now. Something to do with the new heart meds they are going to start him on as soon as his kidney function looks better. His levels are slowly moving in the right direction. It was pretty cute, our nurse gave him a mohawk today. Combined with his new puffy physique, he looked quite like a little bruiser.

The best part of today is that he has been comfortable and sleeping. He is only on precedex and versed. Normally he is also on a ton of fentanyl to help sedate him. So far they have not had to give it too him. It is nice to see him resting and comfy. Alexa also spent the day with me at the hospital. So I guess that makes two things that were the best part of today! It was fun to be one on one and play games with her. She is such a fun girl.

It has been a good, but hard day today. The word has spread through the floor of Ethan's issues. They all love him around here so much. Many have given a hug or given me that sympathy look. And of course, every time I get that look tears fill my eyes. I long for Ethan to be comfortable, at home, enjoying life. I hope that is in the plan for him since no one has brought me the magic wand I have been requesting!

Good Night

2009-08-05T09:06:00.000-07:00

Ethan had a good night. His heart rate is alot lower and he slept well. His fever was over 105 last night but is normal this morning. Tender mercies. I will update later. He is going to the OR to get new central lines today.
Love-
Heidi

Details (TMI)

2009-08-04T16:09:00.000-07:00

Sometimes I forget I have a medical background when I post. I apologize, but I was not in the mood to go into details earlier. And after many calls of concern and love I would like to clarify that heart failure does NOT mean Ethan is at the end of his journey. It is just another (major) bump in the road. Ethan seems to be pretty stable now. His kidney function is not great and he has another infection. He did not tolerate the heavy hitter diuretics this time. So we need to give him a week before he goes to cardiac catheterization. Let his kidneys recover and get the infection over with. In the cath they inject dye that can harm the kidneys if they are already in a fragile state. So we won't rush to cath unless we need to. The cath will give us the direct pressures in his heart and lungs and tell us what is going on in there.

The current theory/worry is his left ventricle. As you know he does not have a left ventricular chamber, however, unlike most HLHS baby his left side is a big huge mass of muscle. They describe it like a tumor sitting there. Ethan's right ventricle is what does all the work. It is functioning well. The only problem is it appears to not be able to fill up with enough blood before it contracts to push the blood out. They think the blob of a left ventricle is getting in the way and not allowing it to relax and fill as much as it should.

I could go on for an hour explaining things. But most of it is still theoretical. One thing is for sure. He requires ABSURD amounts of diuretics to keep his heart and lungs functioning right. That means he has to be vascularly dry (or dehydrated)or his heart can't tolerate the new passive glenn flow. When he gets too much blood volume it appears his heart's blood flow backs up into his lungs. Causing his lungs to be wet! Since his thoracic surgery he has still battled wet lungs inside. If this theory proves to be true, then his right ventricle is under stress causing his BNP levels to rise. (By the way his BNP is 13,000 today). High BNP in your body tells your kidneys the heart is in trouble. The kidneys slow/shut down as a defense mechanism to protect the heart. Thus a vicious cylce of trying to keep Ethan vascularly dry so his heart can function properly. Because when his kidneys sense this hormone, they slow down and retain fluid. (I hope you can all understand this.)

Heart failure can be fixed with medications, procedures, and/or surgery much of the time. Sometimes it cannot, and a heart transplant is needed. We won't know more until after the cardiac cath. Once his infection looks better they are also going to trache him. It is much easier to put the ventilator on his trache every time his lungs get wet or sick than it is to intubate him. When he is intubated he is uncomfortable and has to be sedated and restrained, doesn't move around and only becomes more succeptable to infection. With the trach he is alert, moving, and can be playing when he has to be on the ventilator. So it won't be as hard on his body when he has setbacks. As mentioned weeks ago his lungs are also diseased at this point. Meaning they are consolidated from prolonged irritation. So it is going to take a long time of keeping him balanced to let his lungs heal.

The hardest part today has been the talks with our surgeon and one of our cardiologist. There are some medications we can try to trick his body from thinking it is in heart failure. Thus his kidneys will stop being so reactive and complicating his fluid balance. Those may totally help, or may only buy time. But if the true problem is the left ventricle mass, then they told us to prepare to decide if we are willing to try for a heart transplant. But right now we have to get his lungs healthier so he could even be considered for one (if it comes to that). The next couple of weeks will tell. One thing is for sure. The acute phase of this journey just got a lot longer. We appreciate all of your support and sacrifices on behalf of our family.

Much love-
Greg and Heidi
PS: Sorry if this is too much, but I know loving and curious minds want to know!

Heart Failure

2009-08-04T12:32:00.000-07:00

Something appears to be compressing Ethan's right (and only) ventricle. He is not in a good place. When he gets more stable they want to go in and do another heart catheterization. His ventricle is pumping as well as it can, but cannot fill properly. They hope to find the cause. Hopefully it is something that can be fixed. And hopefully it doesn't require another open heart procedure.
I'll post more later.

Intubated

2009-08-04T08:07:00.000-07:00

Ethan did not do well last night and was intubated at 7am this morning. I will update more after I talk to the docs when they get out of the conference.
Love-
Heidi

The Good, The Bad, & The Worried

2009-08-03T19:12:00.000-07:00

The good news is Ethan's last blood gas was good. So we hope it stays there. Looks like he has avoided being intubated (for now). Other good news is that he had an echo today and his heart function looked good. Greg and I were glad to hear that, however we are sick to our stomachs over some other test results. They did a BNP to day. It detects a chemical your heart muscle produces when it is stressed and having heart failure. Under 100 is a good reading. Ethan's BNP was over 7,000. The doctors are a very confused by this. With that high of a number his echo should show signs of heart failure. And it doesn't. The good news is they can usually correct heart failure with meds. But it still has us worried to death. They will check it again tomorrow now that they have him on a med that should help it. The other bad new is he is still uncomfortable and having fevers between 102 and 104.8 degrees! Ugh! The roller coaster continues.

Tomorrow Ethan will be on of the main topics at their Tuesday morning conference. ALL OF THE DOCS and surgeons affiliated with this unit attend, put their heads together, and try to form a plan for their complicated patients. Lets just say Ethan has been the topic in way too many of these conferences!

Love-
Heidi

Hanging in

2009-08-03T11:19:00.000-07:00

Back on high flow, breathing much easier. Blood gas still isn't that pretty but they feel it is not from respiratory anymore, more like they need to correct his electrolytes to rid the build up of bi carb in his blood. They are doing that now. He has been extremely fussy all morning and has had a temp of nearly 105. I will update later.
Love-
Heidi

Struggles

2009-08-02T20:54:00.000-07:00

Ethan is struggling today. He started peeing less yesterday and it only got worse today. Plus his fevers have been high and his white blood cell count is up. He was not exchanging his oxygen and carbon dioxide well enough and was laboring very hard to breathe, so they put him on CPAP. That is the annoying head contraption that shoots air up his nose in an annoying rythm. It is probably due to his lungs being wet now that he is retaining fluid and not peeing. And as always, he hates it. So they have had to restrain him.

This all started when they tried weaning his diuretics from a constant IV drip to doses given 3 times a day. Apparently his kidneys did not like the change. He is back on all the big guns via IV again. We just pray he will not have to get reintubated tonight or tomorrow. I don't know if Greg's and my heart can take that. His little body is so fragile and weeks of unknown fevers is not helping!

Thanks for all the love and prayers-
Heidi

Unique

2009-08-01T17:42:00.000-07:00

Ethan is doing well except his fevers seem to be back! He had one a day after the 24 hour period of not having one. But since midnight he has had one 3 times so far. He looks so good. I just want everything to be better so we can come home. He is also continuing to struggle with coughing/clearing his throat. But it is getting better everyday. I just sit there all day doing little coughs for him. You know when you hear somebody that needs to cough you can't help but cough for them.

I was looking at Ethan today and his beautiful eyes and eyelashes and I couldn't help but think, "Who does this kid look like?" He definately has some recongnizable feautres, but he doesn't look like my other babies! He is unique in more ways than one.

Quiet Progression

2009-07-31T14:49:00.000-07:00

Today continues to be another good day. They are continuing to wean his medications and high flow down. He is still very sleepy and has a very high heart rate, but everthing else is great! We continue to hold our breath as each day passes with no significant setbacks.
Thanks for your love and support-
Greg & Heidi

Pictures of the Week

2009-07-30T15:24:00.000-07:00

Sorry, just had to post a few pictures. My older two kiddos are in Texas visiting their cousins. They were so excited, they got to fly there and everything! Thanks Lance and Aimee.

The other ones are of Cannon's day at the hospital. He loved being with Ethan and playing doctor. However, he was getting a little to confident by the end of the day and getting into things he shouldn't! But come on, what 3 year old would not try to have a hay day with all the stuff in Ethan's room!

Ethan is continuing to have good days. He is still quite sleepy. But he needs it. Physical therapy started coming in and working with him today. It was fun but overwhelming at the same time. He is so weak, but it will get better. The doctor today said "Everyday I just keep peeking in his room expecting to see problems. . . and they are not happening. I think he is REALLY getting better." Obviously that tells you how sick and fragile he WAS. Ethan has come so far. But it also reminds me how sick and fragile he IS. I express my gratitude everyday for his progress and pray that it will continue. I am all too well aware that with Ethan we can never let our guard down.

Love-
Heidi

Good Day at the Hospital

2009-07-29T20:09:00.000-07:00

Today was the perfect day to let Cannon hang out with me ALL day at the hospital! It was perfect because Ethan SLEPT ALL DAY (and all last night too)! Thus I could play games and hang out with him the whole time. It seems the worst of Ethan's withdrawls are over. He sleeps and just wakes up for his assessments or when we move him. He looks around (looks stoned) gives a half smile and goes back to sleep. Seems those high doses of methadone and ativan are working.

The other beautiful thing is that at the exact time he finally started relaxing and sleeping, his FEVER went away. Whoohoo! So, we cannot help but think that this whole time it has been a withdrawl fever. It makes sense, because the fever came on a few days after he was reintubated through the nose. And as mentioned before, once his ET tube was out of his mouth he was soooo much happier, took his paci, and could self soothe. So with in a 36 hour period his Fentanyl was cut from 10mcg/kilo to 5mcg/kilo, and his Versed drip was turned off. Plus his IV PRN meds (morphine, ativan, etc...) were only given 1-2 times per shift instead of 15 times a shift. So basically that is when the withdrawls first started (and so did the fever)! Of course I could say all this and tomorrow his fever could be back for some unknown reason. But for now it is gone and we are thinking it was a withdrawl fever. My insurance is just glad they tested everything else under the sun 20 times over to make sure it was nothing else!!!

Just a side note to mention my love/hate relationship with insurance. Love them cause we have a five million dollar a person benefit that includes transplants, but hate them cause I have to fight them over everything, and they end up paying, but it is just a pain! The other week when I was losing it with a "customer service" rep, she said "Well, I am sorry you hate that we keep bothering you, but if your CLAIMS WEREN'T SO HIGH we wouldn't have to bother you". I quickly replied, "Well okay then, take all my time you need, I love having the 5 million dollar baby that I can't hold and have to watch suffer day after day" She was quiet for a minute, quickly got to the point, and hung up! (Did I mention this call was during the time when Ethan was so critical we weren't sure if he was going to pull through). So much for "Customer Service" rep!

All is Well

2009-07-28T16:34:00.000-07:00

Ethan is doing well today! Not much has changed. They are taking it real slow. The good news is that he has taken a few 1-2 hour naps last night and today. The withdrawls are not easy on him, nor are his fevers. But overall he looks great. He is down four pounds from two weeks ago! That is how much swelling/edema he had on his little body. He is back to being a peanut!
Much love-
Heidi

Ethan's Voice!

2009-07-27T19:56:00.000-07:00

(You may need to pause the music to hear) For 5 plus weeks all I wanted was to hear his voice. This is all we have heard for the last 24 hours, literally. He can't sleep! Poor guy.

Hematoma

2009-07-27T17:21:00.000-07:00

The good new is it is not a blood clot! The final verdict is its a hematoma (a collection of blood outside the vessel). So the bad news is why does he have it? Right now they are not worried about it unless it gets bigger. It bothers me a little because he is not wanting to turn his head as much to that side. So in time the body will absorb it, or it will get bigger and we will investigate more.
The other bad news is he had a really bad night. He decided to stop peeing well last night and still isn't peeing the greatest. So they have stopped his feeds to reduce intake and are started on TPN tonight. He started struggling with breathing last night and they thought his lungs were getting too wet. His breathing seems to be better, but he is still VERY uncomfortable today. They are just laying low and keeping a close eye on him. They don't want to do too much in case it is something that will pass on its own. I hope it will, and soon, because there are no smiles today and I don't like that!
Love-
Heidi

Fragile

2009-07-26T20:06:00.000-07:00

Ethan is doing well and still giving smiles in between withdrawl episodes. Every time he grins I just want to pick him up and go about normal life like nothing is wrong with him. Then I realize I am on a hospital floor entitled the Pediatric Cardiothoracic Intensive Care Unit. So as quickly as the smiles can come, they can disappear. And suddenly he is shaking, crying, tachycardic (really high heart rate), and inconsolable. Love narcotic withdrawls (not). Not to mention his fever was hanging between 102-103 most of the day which only makes him MORE uncomfortable!

My mom came down this afternoon so I could go to church with Greg. I was saying goodbye to my little man when he smiled and turned his head away like "mom, don't look at me like that". Totally cute moment, except. . . that is when I noticed a blue bulge on his neck in between some skin rolls. So after running tests no one will answer my worries of is it a blood clot or not. They seem to be avoiding me and hoping I will not beg for an answer til tomorrow. That means they want the VIP radiologist to read the scan! Which in turn makes me more worried!

I would think with Ethan's progress this past week that I could finally let down my guard and enjoy him, but I can't. It almost gets harder. With every smile I get more attached and that much more sick when "issues" or "unknowns" arise. I really need to get my emotions in check. We have definitely seen him through a rough period of his life. Getting through these two surgeries is HUGE. But it is apparent Ethan is not in this mortality for a boring and predictable experience!!! He plans on keeping things action packed it seems. Guess I should welcome the grey hairs that are coming with open arms! It is better than what Ethan is doing to Greg. . . balding and grey hairs :)

Thanks for reading my rant-
Heidi

All Smiles

2009-07-25T21:48:00.000-07:00

So I was home most of the day while dad was hanging out with Ethan. I came in, washed my hands, and went over to see Ethan. I was chit chatting with Greg when I first walked up and grabbed Ethan's hand. Jess, the RT, walked over to the crib at the same time (my witness). After a moment I finally turned all my attention towards Ethan and started talking to him. I instantly got a sheepish smile. That made my day! So I kept talking to him and bam, a big huge smile right at me!!! He followed up with two more. So after a few minutes I decided to catch one one camera. As soon as I put the camera in front of him, and blocked my own face, he gave the the biggest pouty face w/ lower lip turned out and all. So sorry, no evidence of his smiles, but I did have a witness!

He is still doing well. Chest xray looking a little better every day. All his IV sedation has been turned off and he is getting methadone in his tummy to compensate. It is helping but he sure has the shakes. All is well, will post more tomorrow.
Love-
Heidi

Baby Steps

2009-07-24T14:09:00.000-07:00

I am so grateful. Ethan is still doing well. He is making baby steps forward. The easy pap treatments seem to be working. His xray looks a little bit better today (still has a long way to go). His labored breathing is getting a little bit easier. And his blood gases are great! He is also peeing well. Fevers are still coming and going. The infectious disease doctor said that the new diuretic we put him on is so close to Bumex that it will be hard to know if that is the problem. I asked him again if his teething could be the cause of the fevers. He said it is unlikely teething would cause such high fevers on and off for a week. But yes, maybe it could be. Hmmmm. He still thinks its a medication fever.

I get scared when I find myself getting excited at Ethan's progress. Yet time after time I have felt the Lord's comfort when Greg and I pray and ponder Ethan's future. We continue to appreciate everyday we have with him. However, we are ready to have many days at HOME with him and our other children!

Baby Steps

2009-07-24T09:17:00.000-07:00

Ethan is still doing well. Improving a little bit everyday!

Cutest Face

2009-07-23T19:47:00.000-07:00

After a day of cleaning, bowling, and swimming, I came into see this beautiful face. I can't get enough of it! Ethan keeps putting his fingers in his mouth and chewing on them. He has two teeth coming in! He is still working really hard (retracting) to breath, but his blood gases and vital signs are awsome. So I pray he can get through this time without tiring his little body and lungs out. Oh yea, and that he can keep peeing! His fever has been just above 100 degrees all afternoon. We'll see. Ethan likes to tease us like that. And just when we think it is going away, his temp will spike again. For now I will just stare at him and try to keep him peaceful!

PS: Gagers took 5th place overall at the final city swim meet in the Butterfly. Good job bud!

Still Hanging In

2009-07-23T14:00:00.000-07:00

I have been hesitant (and too busy) to post because Ethan was really struggling all night and this morning and it was looking like they were going to re-intubate. But he seems to have improved and little and is holding steady this afternoon. So we will still WAIT and PRAY!

His fevers were 102-103 most of yesterday so they decided they had to try and take him off the bumex. The docs switched his diuretics up yesterday at 6pm and sure enough, his peeing slowed down. So he was a bit more puffy this morning. Plus his morning x-ray was pretty bad. The right lung was still somewhat collapsed and it looked hazy. Between the two issues and fever he was laboring to breath, yet his blood gases were good! He has also continued to HATE the CPAP. So they decided to put him on high flow nasal cannula (which is way less annoying than CPAP) and added easy pap treatments every two hours to try and blow up his right lung. Then they tried another type of diuretic about 10am. By noon he was peeing much better and had an xray that was slightly improved from this mornings. Phew! He is also soooo much happier on the nasal cannula. He has not been crying his little head off since the switch.

The bad news is that his fever was 103-104 all night and this morning. They will give him 24 hours off the bumex to see if his fevers improve. If not, then it is back to wondering what is the cause of the fever. I have been home today (my other kiddos need a mommy once in a while) and Greg's mom has been with Ethan. When I call and check in the nurse keeps telling me how good she is with Ethan and how she calms him! Thanks Miriam. . . You might just have to start living at the hospital with him til he gets through this ;)

Thanks to all the cleaners and yard workers who showed up this week to help us!

Love-
Heidi

Hanging In There

2009-07-22T13:10:00.000-07:00

Still on CPAP with support. Blood gases are pretty good. Tried weaning down the support last night and he didn't tolerate it. His morning xray showed partially collapsed lungs. So giving him the day to re-coupe and will try to wean the support tonight. They are pretty sure that his bumex is what is causing his fever. However, that is the magic drug that made him start peeing off all his extra fluid. So for now they are keeping it going and just trying to keep him comfy. Which isn't working by the way. Between the fever and an obnoxious nose piece blowing air up his nose, he is not happy. I was up with him all night and can't leave his side (thus the late post). I just hope he can hang in there. They feel if he can't tolerate weaning the support by mid day tomorrow they will need to re-intubate (which means they will schedule the trache). So only positive thoughts are allowed right now. He CAN do it! Praying for miracles here!
Love-
Heidi

So far so good

2009-07-21T20:49:00.000-07:00

Just had another good blood gas. Keep the prayers coming!

Extubated

2009-07-21T14:56:00.000-07:00

Ethan got extubated around 2:30! They put him straight to nasal CPAP. The picture looks almost as bad as being on the breathing tube, but its not. It is nasal cannula on steroids. It blows air in a rythmic pattern in his nose. It gives a little extra support to help the transition to breathing on his own. Since Ethan has been intubated so long they want to give him a 24 hour transition time on the nasal CPAP then he will go to high flow nasal cannula if all goes well. So right now we are trying to keep him comfortable and make sure he can tolerate being off the vent. I asked the doc if he could put a scope down and make sure his vocal chords are moving. He said nope, we will just watch and see how he does. Oooookay!

Ethan's voice is very quiet and raspy, which is normal after being intubated. And he doesn't exactly like the new CPAP set up. When he gets irritated he has this quiet, sad cry. I am so grateful, and nervous, and excited, and scared at the same time! Time will tell if his airway can tolerate breathing on his own. They will also be doing blood gases every few hours to make sure he is oxygenating well enough. Starting tomorrow they will be taking his antibiotics away one by one to see if his fever goes away. The other good news is that his fever has only been around 100 degrees today.

Thanks for the love & support-
Greg & Heidi

Impressive 1st Sprint

2009-07-20T20:54:00.000-07:00

At about 11am they went to start Ethan's first ventilator sprint on CPAP mode with moderate pressure support (for all those moms of vented babies out there). They said we don't want to stress him out so lets shoot for 30 minutes. Well, FOUR HOURS later he was still doing great!!! It wasn't until the four hour mark that he was showing some signs of getting worn out. So they decided to rest him. WOW! That made me HAPPY! He has basically not worked at breathing for 5 months. I will definately take four hours for the first sprint! So tonight another sprint is planned for the same duration, but with very low support.

The only bad news is he still has the fever. The infectious disease team thinks it is a fever as a reaction to ALL the other antibiotics/meds he is on. They call it medication fevers. Hmmmm. Thats one I hadn't heard. But, that would be better than some rare disease we can't figure out!

Another heart mom recently posted on her page that she is grateful to be going through this experience and to be able to be so closely involved in experiencing the miracles of God. I definately agree with the second half of that statement :)
PS: Greg and I have gotten to each hold him in the last 24 hours... even with 50 cords and machines attached it was the best feeling.

Much love-
Heidi

Fever & Extubation

2009-07-20T09:05:00.000-07:00

Ethan is hanging in there. He still has a fever hanging between 100 & 101 degrees. His CT scan had no findings. So back to trying to figure him out. The only test that still grew something was the secretions from his ET tube. So the newest thought is that there is bacteria on his actual breathing tube that his body can't kill.

The good news is that his lungs are still looking great. The team has decided to continue with the sprints and work on weaning down the ventilator even though he has a fever. They are also going to lower his sedation and have a goal of trying to EXTUBATE him sometime TOMORROW! They are going to be aggressive with it and hope that the fever will subside with the tube out. I want the tube out so bad, but I felt sick to my stomach when they said this. It just makes me nervous. It is what Greg and I want (the tube out), but I am so afraid. I guess everytime I get my hopes up he ends up having a major setback.

I think I am fearing the fact that he won't tolerate being extubated and they will have to put the tube back in. . . Or worse, he will have airway issues and need a trache. Just afraid of the unknown. However, they won't extubate if he doesn't tolerate the weaning process. So we will see how he tolerates the next 24 hours?!*!
I need to call Greg, he is my optimist and will tell me how "Ethan is going to do great and be so happy the tube is out, so don't worry!" Where is my faith. . . I know he can do good, now I just need to believe it!

Doing Better Than Expected

2009-07-19T09:24:00.000-07:00

After the rough start to the day yesterday, he is now doing BETTER than Greg and I expected. He started late Friday night with a 104 degree temp that they couldn't break. By mid to late afternoon Saturday they had got his fever down to around 100 degrees after putting ice packs on his body. Ever since then they have been able to keep it between normal and 101 with tylenol and motrin and Ethan doesn't seem to be as uncomfortable. The other GREAT NEWS is that by late afternoon he began PEEING really well again. Hopefully this additional illness will pass soon and will not have caused major setbacks.

On a side note, I have been asking you all to pray for Ethan's lungs and I am happy to say his lungs have been improving over the last four days! He was tolerating sprints well and his x-ray was getting a lot prettier. Yesterday they decided to stop sprints and let him rest until this fever subsides. This mornings xray was not quite as pretty as yesterdays, but not as bad as we expected with fever and fluid retention.

They have also decided to send Ethan for a CT scan today to see if they can visualize where the infection might be in his body since all his blood tests keep coming back negative.

Thank you all-
Heidi

Fever

2009-07-18T15:07:00.000-07:00

Ethan is celebrating the day with a 104 degree fever that doesn't break with motrin or tylenol. All his tests are negative so far AND he is on heavy antibiotics still from last weekends fever! The poor little guy is very uncomfortable and has, drum roll please, stopped peeing! He just can't win right now :(

5 Months Old

2009-07-17T22:21:00.000-07:00

Happy Five Month Birthday Ethan! The kids came down to see Ethan and draw some pictures for his door.

Doing Well

2009-07-17T15:38:00.000-07:00

Ethan is doing very well. Last night they had to lower his diuretics because he was peeing too much. They didn't want to bottom out his blood pressure or damage his kidneys. But he is still peeing well on his lower dose and has been very stable and comfortable. They even decided to do a sprint on the ventilator for 5 minutes this morning and he tolerated it well. They did one the other day and all heck broke loose in those 5 little minutes. As I mentioned a few posts ago, when he got the lung infection again they put his ventilator settings up really high.

So the weekend plan is for Ethan is to keep him peeing well, slowly lower his sedation some more, and try a few more ventilator sprints/lower settings. If all goes well the next few days, then we will work on trying to drastically lower his vent settings next week. As mentioned before, if it becomes apparent he is going to take a lot longer to get off the vent, then they are going to re-trache him. I already asked them to delay the trache to give a chance; I doubt they will let me push it off again. I humbly ask for you to pray for his lungs. The trache would not be permanent, but it would definately make life a lot harder when we are home. And its another surgery. . . But we will do whatever it takes to get him better!

Love and Thanks-
Heidi

I love PEE

2009-07-16T14:16:00.001-07:00

Yes, that is right, I love pee. They changed around Ethan's IV diuretics at 11am this morning. By 2pm he has peed over 300 grams! I know to you that means nothing. . .to me it is the beginning of heading in the right direction. It is better than oatmeal chocolate chip cookie dough and a Dr. Pepper! If his kidneys keep responding this well, his over-sized figure will start disappering soon! Please pray for pee (and his blood pressure to tolerate lots of pee)!
Love-
Heidi

The Pillsburry Dough Boy

2009-07-15T19:57:00.000-07:00

Oh, Ethan is huge again! Still retaining too much fluid. His kidney function looks great. He just likes the full figured look I guess. The good news is his vital signs are still very stable and he seems to be reasonably comfortable. I don't know how he is not in major pain though. Its hard for me to even touch him. He looks like he is going to pop if I push too hard! Poor little man. The docs think he started retaining again, as a defense mechanism, when the infection hit. He is still fever free, but his white count is slightly elevated. Hopefully his body will let go of all the fluid once the infection is completely gone. I don't know if they can give him any more diuretics than they are already.

We are also continuing to pray he doesn't need any more chest tubes. He has been chest tube free for 36 hours and no build up of pleural fluid yet. The huge effusions are what led him to spiral downward after the last infection. So we hope this one will be nipped in the bud alot quicker.

Love & Thanks-
Heidi

PS: Congrats Gage. He is headed to the semi-finals for swim team in the backstroke and butterfly! Yea, you heard me, BUTTERFLY. . . I am in my 30's and I still can't do it! Go Gage!

Hanging in there

2009-07-14T18:34:00.000-07:00

Ethan is struggling a hint more today. His diuretics were not making him pee as much yesterday. He ended the day very positive with intake which means he swelled a little more. His oxygenation is struggling more too. Probably the pneumonia. He is on higher vent settings. However he has been very content when he is awake! Looking around and even grabbing one of his toys I put by him during tummy time. Go figure! Doing worse but looking better. . . tender mercy I guess. I am grateful. Greg and I are at the realization we may be here for up to a few months more. It is hard, but whatever it takes to get him better. We couldn't do it with out all of you. I just wish I could promise I would make it up to you all one day. . . Just don't know if that is possible. We have been served and loved to the extreme.
Thanks-
Heidi

Looks Like Pneumonia

2009-07-13T18:06:00.000-07:00

Ethan is still stable. We were enjoying higher oxygen sats (high for him anyway) during the weekend. But they dropped a little lower about 5am this morning. They also decided to start antibiotics due to the fever. It is a good thing. They suctioned his breathing tube and sent it for a culture yesterday and it is growing a bacteria consistent with pnemonia. The good news is it doesn't appear to be too bad, his white blood cell count is a only a little elevated and his chest x-ray doesn't look worse. So hopefully starting the antibiotics will nip it in the bud. So in other words, the plan is the same, but I am a little nervous he might take steps back from these new developments. But the team is determined to get him to turn a round this week! I think they know I might lose it if we don't see some progress. . . hospital psychosis is kicking in again! We have lived at the hospital for four months of his almost 5 months of life. Ugh! At least we have made some great friends along the way.

Slow, Steady, & Agitated

2009-07-12T12:43:00.000-07:00

Ethan is doing well. He was very content yesterday. So last night they lowered his fentanyl drip again. Twice in 24 hours. Plus, his prn meds have been drastically reduced for 2 days now. . . So withdrawls are kicking in (even though he is still on hefty narcotics). They have increased his withdrawl meds, but he still he is having a hard time "settling". Not to mention he has had a low grade fever for 24 hours now. But all his blood work is negative for an infection. It could be a little viral something, or his body reacting to the withdrawls. None the less, we are staying the course and trying to keep it quiet, and optimize his nutrition.

Like I mentioned yesterday, if Ethan doesn't get off the vent or let go of his swelling then they are going to do procedures: trache him again (because it is easier to manage his lungs and wean him with it over the next couple weeks. Ugh! They say it would be temporary again. . . but there is always the risk once its in, it won't come out. They also will insert a peritaneal catheter (a dialysis cath). His kidneys are working great, but the said he may need a "third kidney" to rid all his excess fluid. Really hoping we don't have to put him through more procedures. It breaks my heart to see him going through so much. Yet I am in awe that he has endured this much so far. But we will do it if it will make him better.

Gotta Love the Paci

2009-07-11T09:12:00.000-07:00

So we didn't get to hold him, but I did get to lie down with him (thanks Jess). In a full size hospital bed, Ethan and his lines/equipment take up 2/3 of it. Leaving 1/3 of it for me. But that was quite all right!

Also Ethan got re-intubated through his nose. It was a tougher process than I was anticipating. But it has been great. He had 18 prn meds two nights ago(doses of pain meds on top of the insane amounts he is getting at a constant rate through his IVs). Last night he sucked his paci for comfort and had 1 prn med. You heard me, ONE!

The surgeon came in yesterday and talked to us about procedures that might have to be done if he doesn't turn the corner by mid week. I don't even want to mention them, it makes me to sick. But in the mean time he said he will never turn the corner on his own with those insane amount of drugs in his system. So I hope the change and ability to suck his paci for comfort will help.

Ethan is also peeing great. He is on the heavy hitters of diuretics, four of them I might add! But unfortuantely the swelling isn't coming down yet. Now that it looks like his comfort is going to be a little better, we need to pray for him to let go of all the fluids he is holding on to.

I had a few days full of lots of tears. We were beginning to wonder if he had the ability to turn the corner and heal or if his body was just too beaten down. Our team assured us he will turn the corner, but it is not going to be right away. It is going to take a long time they said. He is weak. But I KNOW and PRAY he will continue to have the strength his has shown so far. They say he has not followed the course of any of their recent LEFT HYPOPLAST patients, yet he has bounced back time and again. I am convinced he can do it! And I know the Lord is very aware of Ethan and our family at this time.

Love-
Heidi

Bonding Time

2009-07-10T09:31:00.000-07:00

Ethan was very fussy last night. His sedation/pain meds do nothing for him now. During all this fussiness they tried weaning down the vent again. It wasn't happening. However, I think I have convinced them to re-intubate through his nose. He is always happier that way. Then he can self sooth more with his pacifier. He has been intubated through his mouth for over a month and has no way to calm himself down. Babies love to sooth themselves by sucking their fists or in Ethan's case, his pacifier. They have been hesitant to do so because they don't want to risk further damage to his airway during the reintubation process. But loading him up all day with narcotics that don't work can't be too good for him either. So hopefully that will happen today.

Also, they are going to let Greg and I HOLD him. It has been over a month as well. They also are going to rearrange things in his bed so I can lay in bed with him. Oh, I can't wait. Other than those two items, the plan is to let him rest over the weekend, make sure his body is balanced nutritionally and with his diuretics, and do a few small sprints to strengthen his lungs. Then we will re-evaluate things/extubation on Monday.

I must admit I am missing my kiddos. I look forward to spending some time with them over the weekend as well.

Much love-
Heidi

Frustrated

2009-07-09T17:27:00.000-07:00

Sorry to take so long to report. Basically I have no news to report. He is still stable. The drying him out theory didn't work Wednesday. So they switched up the diuretics again and it seems to be doing the trick. So we are headed in the right direction there. Since he was unable to be dried out yesterday, they didn't work on weaning his ventilator today.

Ethan is "stuck". He really needs to turn the corner, but it is not happening. The diuretic improvement today should help. I keep telling myself to be more patient. He was soooooo sick for 3 weeks and had major surgery again (lungs). It is going to take time for him to get better. It is just so hard to watch patiently. He no longer responds to his sedation, hates the tube in his mouth, and gets more irritated when I try to comfort him. I think when I comfort him he is mad I am not taking the breathing tube out for him!!! Sorry dude.

Greg and I are struggling with his lack of progress and are well aware that the longer he is on the ventilator, the greater his chances of having more problems are. It is in the Lord's hands. We just pray He wants the same outcome as us!

Drying him out

2009-07-08T09:36:00.000-07:00

Todays plan: changing up his diuretics to dry him out more and more tummy time to breakup the fluid and air pockets in and around his lungs. Tomorrows goal: attempt to extubate! I have a good feeling about this plan. Other than that he is doing good. He was pretty fussy last night. Think his new chest tube is making him uncomfortable.
Love and Thanks-
Heidi

Tummy Time

2009-07-07T17:22:00.000-07:00

Ethan is having tummy time for the first time in 6 weeks. I was shocked that he liked it. Tummy time has never been frequent with him. Between two open heart surgeries, a G-tube, the trache (that I don't miss), and on and on, you can see why he hasn't had it much. We thought it would help move around the little bit of fluid left in his pleural spaces and get him off his sore back. You can see in the picture his thoracotomy scar for his surgery last week. The blue thing is a chest tube that was put in today to get a pocket of fluid that was on his right side.

Ethan had another CT scan of his lungs today. It helped them place the new chest tube and gave us another look at his lungs. We are still a bit concerned because his lungs don't look as full of air as they should. They look a bit "consolidated". He definately is still full of fluid and needs to be dried out a little more. Hopefully that will help his lungs out too. They talk about weaning the vent again tomorrow. We'll see. Maybe they will decided to dry him out a little more before they try again.

Today little Miss Bela stopped by. She has HLHS and spent 6 of her first 7 months of life on this heart unit. She is now 16 months old, walking, and cute as a button. It rejuvinated me to see her and think that Ethan will hopefully have a LIFE outside this unit (No offense to the staff. They are our family here. But it would be nice to be home!)

Also I wanted to give a shout out to themeanestmom.blogspot.com and babysafetravel.com. They gave Ethan a gift certificate towards a purchase from their baby boutique. That was very appreciated. I am amazed at all the the good works that are being done out there. We are truly blessed!

A Nice Day

2009-07-06T18:39:00.000-07:00

After a drama night, it has been a nice quiet day. All of Ethan's tests have come back negative so far! Praying it stays that way!
Much love-
Heidi

Rough Night

2009-07-06T09:30:00.000-07:00

As I mentioned in my last post, Ethan was really fussy last night. I told the nurse and doc I think he was trying to tell us something. And he did. He started struggling during his sprint (low vent settings). So they turned the support back up and then a while later (at 1 am) he dropped his 02 sats into the upper 50's and wasn't coming back up. They started bagging him and then his blood pressure dropped. So they were bagging and giving fluids and started pushing packed blood. He stabalized after about an hour.

Since then his sats have continued to dip into the 60's alot and he has been very diaphoretic (sweaty). Last night they ran tons of blood work and started him on antibiotics just in case. This morning the docs and surgeons had an Ethan pow wow. We are currently focusing on three aspects. The possibility of an infection, blood clot that might have gone to his lungs, or the thought he opened up another collateral vein! Either way he is Naughty! Naughty, naughty, naughty! I just wish we could figure him out. I know he is so uncomfortable. I just wish we could get the breathing tube out and give him his pacifier. Who am I kiddding. . . I just want him better, smiling, and in my arms!!!

PS: I must give thanks to his little angels over him again. Another rough struggle, and another GOOD blood gas after.

Slow and Steady

2009-07-05T20:30:00.000-07:00

Nothing too much to report. Ethan is about the same. They are slowly upping his diuretics. He still is sooooo puffy. They have been doing longer sprints on the ventilator (turning the settings down to almost zero for 90 minutes at a time). It is helping him to work harder to breath for short periods. He has been intubated for a month now and isn't used to having to work. The plan for tonight is to do two sprints over 3 hours each. The second sprint would end about 8am. If he is doing well at that point they will extubate. I am trying not to get my hopes up. He has been real fussy the past couple of hours. I think he may be letting us know he is not ready yet. We'll see!
It's been a nice 24 hours though. Ethan has been stable, thus Greg and I got to spend some time with the other kiddos (Thanks to the Grandparents). We enjoyed the 4th of July together with the Bench fam, attending my niece's baby blessing, and then brought the kids to the hospital this afternoon to see Ethan. We had been holding off bringing the kids down until he was off the ventilator, but we got sick of waiting. It was good for them to see him. Then we went to the heart unit playroom and played Shoots and Ladders for way too long (I came in last place every game, and Gage likes to rub it in my face!). But it was good times.
LOL-
Heidi

Breakdown Day

2009-07-04T13:30:00.000-07:00

I know I have much to be thankful for. I love this country and appreciate all the sacrifices that have come before us to allow our family the joys and priviledges this country has to offer. However, today has turned into a very hard day for me. Ethan was unable to get extubated this morning. He does great on little support with the ventilator, but as soon as they turn all support off he begins to struggle and retain CO2. So we will try another day.
The doc thinks we just need to get more fluid off his body and out from inside his lungs. He is still the pillsbury dough boy. They are increasing his diuretics. So hopefully soon he will be ready. There are alot of things in life that stink. I do not in anyway feel my life is bad. . . but to watch your baby suffer day after day for weeks on end and not be able to do anything about is heartbreaking. After awhile a pat on the head and a holding of the finger are just not enough when he is crying in pain. Oh well, at least he is not going backwards today!

Yes, I have other children

2009-07-03T21:23:00.000-07:00

So my kiddos are getting handier at the computer, especially my 3 year old. He knows how to go to 3 websites. He clicks on the internet link and scrolls down the address bar to look for webkins.com, nickjr.com, and our blog. He acts all grown up and says he is "seeing how Efin is doing" when he looks at the blog. The kids have been mentioning lately that there are NEVER pictures of them on the posts. So here it goes. . . A post about ALL my children:

My older kiddos have done swim team this summer. Both have stuck with it and exceeded my expectations. Alexa has stuck with it and enjoyed the social aspects of having swim team with her BFF's. She was so excited in that picture cause she had a pink ribbon. I didn't have the heart to tell her it was a disqualification one (leg kicks weren't right). Gage, as usual, has stuck with it because he is determined to make it to divisionals and be the "best of the best". He has done well and is always picked to be on the relay team at the meets. At this weeks meet Cannon turned to me and asked why their swim races are meat?

Cannon has more personality than our whole family put together. He came in my room this morning with his hands held high, so excited to tell me something. And anyone that knows Cannon knows he studders when he can't spit his words out fast enough. Our conversation was about "How daddy was so bawing (boring)" He kept saying over and over with his hand waving about. I finally asked him why daddy was so boring? He said "cause he doesn't take me to the Lake anymore". I thought that was so funny. I explained I am sorry. It's not that daddy is boring. He is just always at the hospital helping take of care Ethan for me. I wasn't sure if that explanation was suffice. But after thinking hard for a minute he dropped his arms and said "Okay" and walked out. Drama over.

Thanks to my cute, darling, and creative friend Heidi (love her name) and my other cute, darling, delivery girlfriend Liz, Ethan has a festive holiday beeny and glow sticks to ring in the fourth! Hopefully I can get a better pic if his ET tube is out tomorrow.
FYI- The plan is to extubate at 8am tomorrow(Saturday) morning! Keep your fingers crossed and your prayers coming!

Not Extubating

2009-07-03T10:25:00.000-07:00

Ethan is breathing well on very low ventilator support, but his chest x-ray doesn't look that good. His lungs still look quite wet. So the extubation is off. We will re-evaluate tomorrow. I am sure it is best. We want him to be totally ready.

Extubation Time?!*@!

2009-07-03T08:24:00.000-07:00

I am nervous. They are going to try and extubate before noon. Please PRAY for a strong AIRWAY. He has been intubated for 3 weeks now. Seeing as how he just got his trache out before the Glenn, I am nervous that his airway is going to be very weak and irritated from the prolonged intubation. Not to mention taking deep breaths can't be too fun when you have had recent surgery in your pleural spaces!
Thanks-
Heidi