Thursday, November 14, 2013

Visitors

We have the most wonderful family and friends.  So many people have reached out to us since Ethan has passed and it has helped so much.  Every single card, note, gift, hug, prayer, and smile have meant so much to us.

In August, when we found out that Ethan wasn't going to be with us long, we told our immediate families that if they wanted to meet Ethan they would need to be here when he was born.  They rose to the occasion and every single one of my siblings and Jeff's siblings bought plane tickets to be here for Ethan's birth.  It was amazing to have so much support.  My four siblings (plus four grandchildren) planned to stay at my parents house, and Jeff's three siblings (plus two grandchildren, an aunt, and a sister-in-law) planned to stay with us.  If you're counting that meant 10 people in my parents house and 11 people at our house.  I have to be honest and say I was a little overwhelmed with the thought of delivering such a special baby, not knowing what the outcome would be, and entertaining so many guests.  I will be forever grateful for my mom and my mother-in-law for taking on the rolls as hostesses and making sure everything was taken care of.  My mom loaned us foam pads, sheets, pillows, and towels for everyone.  My sister Jen came over the night before guests arrived to help clean and set up beds.  And my mother-in-law took on  my duties as housewife the entire 4.5 weeks she was here.  It was a team effort!
Cousins: Braxton and Miles

Braxton, Harrison, Evelyn, Maddie, Misha

Christy and Jack Sr.

Harrison and Miles



Talking about Ethan's birth plan and setting up the Google Hangout
Jeff, Cathy, Megan, Evelyn

Two Peas in a Pod: Jeff and Maddie

Tom, Christy, Evelyn, Cathy, Tierney
Aunt Nancy, Tierney, Jared

I don't know what I'm doing here.

Jeff and his siblings

Jeff's family

My Family

I can't even describe how thankful I was that everyone was here.  Since we really didn't know what to expect when Ethan was born, I had so many different scenarios floating around in my head.  I was trying to figure out what it might be like after he was born, but really had no idea.  And the scenario that did end up playing out was not one that I had seen coming.  We were so shocked that Ethan came out so healthy, but declined so quickly.  I never imagined that we would be saying good-bye to our baby boy so soon. (Full birth story to come later.)  Anyway, even though I was a bit worried about having so many people around at such a fragile time, I am SO glad that everyone was here to meet Ethan.  It helped immensely to have such a big group of family around to love us and support us before, during, and after Ethan's birth.  And the hospital was very accommodating for our huge group.  On Monday (the 30th), I think we had claimed the three largest rooms in the labor and delivery unit of the hospital.  I am so glad they understood the importance of having our family close on that day.

After coming home from the hospital and getting through the week of the funeral (another story to come later), we had three wonderful visitors come and spend time with us.  It really helped me to have something to look forward to each day and a reason to get up out of bed in the morning.

Cathy - Jeff's Mom
Obviously Jeff's mom was here for Ethan's birth, but she stayed for four more weeks afterwards too.  This had been planned from the beginning so she could be there for me when Jeff went back to work.  At the time we didn't know if this meant sitting with Ethan and I at the hospital, helping me with a special new baby at home, keeping me company if Ethan passed away, or all of the above.  I told my mom one day after Ethan passed that it was weird to start making plans again.  For the longest time we couldn't make plans after September 30.  We had no idea what we would be doing and what our life would be like.  After the funeral Cathy and I were free to make plans for the next few weeks she was here.  Jeff took off two weeks from work, so we spent that time with him.  We relaxed at home, worked on a 1500 piece puzzle, played games, cross-stitched, watched movies, attempted to cook freezer meals (It's harder than it looks!), and ate out at all our favorite local restaurants.  We had a blast.  When Jeff went back to work, Cathy and I spent our days with my mom in her amazing basement sewing room.  We had so much fun working on several different projects.  We quilted on the long-arm machine, sewed quilt tops together, learned to applique, did a painted wall hanging, and found too many fun new projects to start.  It was so fun that I think we are going to try and make "Quilt Camp" an annual tradition.  I wish I would have taken pictures of all our projects we did!  Other than Jeff, I have the best in-laws in the world!  (And I'm not just saying that because I know they read this blog.)

Nichelle - My Best Friend
Nichelle gets the award for the most surprising visit.  Sunday night, the night before Ethan's graveside service, she showed up on our doorstep.  We had no idea she was coming.  She had driven about 1200 miles to get here and made it just in time to meet sweet baby Ethan before we buried him Monday morning.  I still can't believe she made such a long drive just to see us for a day before having to turn around and go back home.  It meant the world to me.
But that is not all... Nichelle came back (on an airplane this time) three weeks later to spend a week with me after Cathy left.  We had too much fun.  We spent a lot of time shopping, relaxing, and sleeping in.  We had such a great time.  That's what I love about Nichelle...we can have fun together doing absolutely nothing.  We also played games, cooked delicious meals, and talked and laughed a ton.  I am so blessed to have such a wonderful best friend!

Jessi - My College/Teacher/New Zealand Friend
Jessi and I met in college at BYU.  We lived in the same apartment complex, which meant we also went to church together.  We had the same major, which meant we had classes together.  We taught first grade together.  We even did study abroad together and were roommates in New Zealand.  Jessi is a great friend.  Our personalities are so much alike. Since she is a teacher, she came for the long weekend over Veteran's Day.  We spent Saturday running errands and attending a wedding reception.  Sunday was spent playing games and having dinner at my parent's house. On Monday we had brunch, got pedicures, and did a little shopping.  I am so glad she came to visit!

Now What?
Now it's back to being just Jeff and I.  It was wonderful to have so many visitors, and I think it really was good for me to have a reason to get out of bed everyday.  But it's also kind of nice to get back to "normal."
Jeff is back at work and doing really well.  He's gotten some good news from his boss recently that he is really excited about.  I am so proud of him for being such a hard worker.  I know it can't be easy for him to go to work everyday while I get to stay home and work on whatever projects I want.  He is such an amazing husband.
I have been busy with visitors and projects.  But I have also been looking at the future for me.  As much fun as it is to stay home all day and do whatever I want, I feel like something is missing.  I am pretty good at staying busy, and I have no doubt that I could keep myself busy all day, but there is something to be said about feeling "needed."  I miss knowing that someone is relying on me for something.  For that reason I have decided to s-l-o-w-l-y get back into teaching.  Even though there are teaching jobs available mid-year, I've been there/done that and don't ever want to do it again.  Instead I am going to try my hand at subbing.  I started seriously thinking about it last week and as of today I can officially start working.  Although I don't think I'm quite ready to take jobs yet.  I didn't expect the process to go so fast.  I am mentally preparing myself to start taking jobs after Thanksgiving.  We'll see...

Monday, October 28, 2013

Ethan's Story

Written with love by his father, Jeffrey, who felt he could not read it at the funeral service.  The story was read by his Auntie Megan.
Ethan Thomas K. was born as the first child to Jeffrey Wayne K. and Laura Ranae K. on September 30, 2013 at 4:15 PM.  He was 7 pounds 3 ounces and 21.5 inches long.  His short life ended at 5:37 PM the same day.
Ethan's middle name of Thomas was given for the first name of his maternal grandfather, Thomas Michael B., and the middle name of his paternal grand father, Jack Thomas K. Sr.
Ethan's story began at the 20 week ultrasound in May of 2013. Jeff and Laura learned their son, Ethan, had potential issues with his heart.  A fetal-echo-cardiogram confirmed Ethan suffered from Hypoplastic Left Heart Syndrome (HLHS) which is a diagnosis given to children with underdevelopment of the left side of their heart.  The diagnosis was dire but with three open heart surgeries and a heart transplant later in life, Ethan could be offered a challenging but rewarding life.
In an effort to support other heart moms and keep family updated, Laura paid forward the kindness of other heart moms by creating her blog, ourhlhsbaby.blogspot.com.  Through the kindness of friends and family, Ethan's blog has more than 10,000 views with readers in many countries.
On July 22, Ethan's diagnosis took a turn for the worst.  The severity of being born without a left heart ventricle was further complicated by Ethan having an Intact Atrial Septum (IAS) or the lack of a hole between the top two chambers of his heart.  The IAS prevented his heart from naturally mixing his red and blue blood.  Each day Ethan grew, blood pressure built in his heart's left atrium unable to escape quickly enough causing slow damage to his tender lungs.  His doctors were concerned he would be unable to properly oxygenate his blood after birth.

Ethan had joined the ranks of babies with the most severe and rare of heart defects.  His case was reviewed by doctors at the cutting edge of heart surgeries across the country.  With the addition of a catheter surgery immediately after birth, Ethan was offered a 50% chance to survive initially and a 5% chance to reach the age of 5.
Ethan gave a glimmer of hope during the final month of the pregnancy.  His heart had grown a vein early on allowing his blood to mix and reduce the blood pressure in his left atrium.  The little decompressing vein appeared to be doing its job.

Ethan arrived at a full 40 week term on September 30th.  During labor it became apparent his little heart didn't have the strength to withstand any contractions.  He was born by C-section surprising the room with his ability to cry.



Our best hopes were that Ethan's blood saturation would be 50%.  In a show of hope, Ethan delighted everyone with oxygen saturation levels of 66% and an APGAR score of 8.8 out of 10.  After a quick hug to his mother and photo, Ethan was rushed to the surgery room through a gauntlet of 22 loving grandparents, aunts, uncles, and cousins showing every sign that he would pull through.
During surgery, Ethan's heart defect and damaged lungs moved more quickly than the diligent and careful hands of his surgeons.  The complexity of the surgery they were attempting was not able to be completed successfully during the short time Ethan lived.  He returned home to his Heavenly Father one hour and 22 minutes after his birth.  


Ethan's short life is an immeasurable blessing in strengthening the marriage, faith, and devotion of his parents.  He has tightened family bonds and inspired the faith in Christ of many.  His short life and passing has reminded his family of the kindness and charity still prevalent in our communities.



Tuesday, October 22, 2013

Proud Parent Post

I won't write much today (although I plan to continue writing on this blog in the future), but I just have to share these amazing photos of Ethan.  If you know anyone who has a baby pass away, you must tell them about the organization Now I Lay Me Down to Sleep.  They take beautiful photos of your angel baby for free.  They are available all over the world, 24 hours a day.  They are amazing and we are so very very grateful to have such beautiful photographs of our sweet baby boy.  Enjoy.














Wednesday, October 2, 2013

Funeral Information

Ethan Thomas Kirk

Viewing:  4:00 pm 
Funeral:  5:00 pm
Friday, October 4, 2013
__________________________________
Graveside Service
Monday, October 7, 2013
10:00 am

Family and friends... For location information please see the information we have posted on Facebook or contact us directly.  We would love your support during these important events. 

Monday, September 30, 2013

Family Time

I forgot to say that Laura and Jeff were able to spend a minute or two with Ethan as soon as he was born before he went into surgery.  He was crying and their sweet nurse took some pictures of those moments.

Ethan Passed Away

We have some sad news to share now.  Ethan was not able to survive through the surgery.  His heart was just not strong enough and was not developed the way it needed to be to sustain his life.  His case was the worst the surgeon has ever seen. 

Jeff and Laura are going to spend some time privately with Ethan now.

Photo

Ethan is in surgery in the cath lab.  His surgery might take 3 hours or so (that's normal).  Laura is out of surgery and recovering in her room.  She is very tired and sleepy and not allowed to have visitors right now.  We are close by and ready to be there for us when she needs us.  Jeff is in the waiting room outside Ethan's surgery suite.  Jeff's father, brother, and sister-in-law are waiting with him. 



Look at all that hair!  This photo was taken by Megan, RN (Laura has talked about her on the blog before) right after he was born. 

Here is a video of Ethan being transported to the cath lab right after delivery.  Look at that awesome team of medical professionals taking care of him!  http://youtu.be/kIUYHER2weI  And all that family paparazzi trying to get a shot of him!

Welcome Ethan Thomas Kirk!

Ethan was born by c-section and he is healthier than expected!  His oxygen level was 66% at birth and he cried after he was born.  The doctors were hoping for 50% and he was at 66%!  We are overjoyed!  The whole family was able to stand and see him in the hallway as he was transported to the cath lab.  He weighed 7 lb 3 oz.  Laura is finishing up in surgery now and will be transported back to her room when she is ready. 

Ready for C-Section

Laura and Jeff have made a very well-informed decision to move forward with the c-section.  Laura is being prepped and Jeff is changing into scrubs right now.  They spoke to the pediatric cardiologist and he also feels like this is a good idea.  As soon as Ethan is born he will be taken to the cath lab for surgery.  Jeff and Laura will have a few seconds with him before he has to go.  Laura will come back to her room to recover with Mom and sisters.  Jeff and the grandfathers will stay with Ethan.  He should be born shortly.

Still trying labor for now

The latest great news is that Ethan is healthy inside Laura's tummy right now.  They are going to try one more round of Pitocin and see how Ethan tolerates it this time.  If he's fine, she will continue this course.  If he has trouble again, they will proceed with the c-section.  It's unclear how a c-section affects Ethan's prognosis outside the womb.  We know that a vaginal delivery is better for his heart and lungs but if he can't tolerate labor that it the route she will have to take.  Everyone is in better spirits now that we have some hope again for a positive outcome.  Thank you for your texts, comments, thoughts, and prayers.  We appreciate all of you!

PS - He is tolerating a low dose of Pitocin right now.

Stable - No C Section yet

My mom just came out with an update.  There are still some options available right now.  This is not a situation where we have to do a c-section right now.  What is happening is Ethan does not tolerate the Pitocin.  His heart decelerates when they try to give it to her.  Without Pitocin Ethan is stable.  Right now we are trying to get a hold of some of Laura's other specialists (namely the pediatric cardiologist) for opinions.

Uncertainty

Most of the family is waiting in the outer waiting room.  Laura and Jeff's parents are with Laura and Jeff.  We don't know if the c-section has started yet.  I guess it was not as imminent as originally thought.  We are keeping the kids occupied and supporting each other as we wait for what is coming next.  We all anxiously look at the waiting room doors each time they open.  I will update again when we know more.

C-Section

Friends and family, things are not looking good right now.  Laura is being prepped for an emergency c-section and they are not sure Ethan is going to survive very long after birth.  He is not tolerating labor well with his heart rate decelerating frequently.

Still in labor

Just wanted to make sure we are keeping you all up to date so you don't have to wonder what is going on.  Laura is still in labor, right now she is dilated to 3 cm and taking a nap.  The nurses are keeping a very close eye on Ethan's heart rate with an internal monitor.  They are adjusting the Pitocin very carefully so it does not have an adverse effect on Laura or Ethan.

Labor beginning

After initiating Pitocin, Laura's water broke and her labor is progressing.  At this time is doesn't look like Ethan will be born right away as she is dilated to 2 right now.  She has received her epidural and hopefully that will make her more comfortable during labor.

Induction started

Good morning!

This morning Laura will start on Pitocin to induce labor contractions.  She and Jeff were both able to sleep well through the night.  Laura mentioned that Ethan's heart rate dropped a little at one point during the night.  She had four nurses in the room working with her and they were able to bring it back to normal.  Everything else has been going fine.  The grandparents are on the way to the hospital this morning.  The rest of the family is going to wait at home until it seems the delivery is imminent.  We thought it would be easier on the kids (and the parents of the kids) that way.

Sunday, September 29, 2013

Checked into the Hospital

Hello everyone!  My name is Marie Mathew.  I'm Laura's older sister posting on her behalf while she is busy delivering sweet Ethan into the world.  I'll do my best to keep the blog up to date for those of you following from afar.

Today we had a really nice day spending time with all of our family.  We gathered at our Mom and Dad's house in Parker, Colorado for a nice lunch.  After lunch we discussed the plan for tomorrow's delivery and the events that might follow.  Laura and Jeff received priesthood blessings of comfort and peace.  Around 5pm we all gave hugs and well wishes as Jeff and Laura left for the hospital.  Tonight they have checked in and the doctors and nurses are preparing Laura for induction in the morning.  Apparently the room is large and they are receiving excellent treatment already.  At this point some of the medicine has started to cause mild contractions (I think they are mild--so sorry Laura if that's not how you would describe them!)  These contractions are not expected to induce labor.  The true induction of labor is scheduled for tomorrow morning.  The exact time has not been specified.

As things progress tomorrow I will update the blog for Jeff and Laura.  We continue to appreciate all of your positive thoughts and prayers for dear Jeff and Laura and precious Ethan.

Monday, September 23, 2013

Blessings

I would be so ungrateful if I never wrote about all the many blessings that have come through this experience.  Going through trials really forces you to take account for where you are in your life and where you want to be... who you want to become.  Jeff and I have talked over and over again about how we had to make a conscious decision to let this trial strengthen us instead of make us turn away from God.  That decision point comes up every now and again, but I truly feel like the greatest blessing that has come from this trial is that we have built a stronger relationship with each other and with our Heavenly Father.

A close friend who went through something similar told me that she never felt closer to her Heavenly Father than she did during that time.  I can totally relate with that, and I'm sure we will continue to feel so when Ethan is here and we are making very important decisions about his life.

Our families have been AMAZING!  Really, I cannot even attempt to list all the things they have done for us to help us.  They have helped us physically, emotionally, spiritually and I'm sure in many many ways that we aren't even aware of.

We have great support from friends both far and near.  Friends from our ward at church have stocked our freezer with meals we can eat after Ethan comes.  What a great blessing!

We have even been blessed by the love and support of people we have never met.  News travels fast, thanks to Facebook and the Internet, and we have received gifts, words of encouragement, and prayers from so many wonderful people that we don't even know personally.

One thing that has helped to calm my nerves about so many unknowns in our future is the connection to other "heart moms."  I have to tell the story of how I met Alli.  Years ago, right after Jeff and I got married I started reading a blog.  I don't remember exactly how I found it, it must have been a friend-of-a-friend or something.  Anyway, I was so amazed at how brave this family was during such a difficult time.  Their baby boy was diagnosed with a severe heart defect and was in the hospital for several weeks after he was born.  Well, fast forward to this year.  When we found out our baby boy had a severe heart defect I thought, "I wonder what that boy's diagnosis was?"  I searched until I found that blog that I had read so many years ago and guess what... their baby boy had HLHS and our baby boy had HLHS!  But that's not even the end of the story.  I re-read the blog and it gave me so much peace to know that other families had been through this and that they are doing well today.  After we got our diagnosis, I sent an email  to our families about what we were going through.  I sent a link with some information from the Mayo Clinic and a link to Alli's blog so our families could know what kinds of things we might be going through.  The next day I got a call from my brother-in-law asking if I wanted to talk to Alli.  He had lived in the same apartment complex as her in college and was friends with her on Facebook.  Crazy, right?  Of course I jumped on the opportunity to talk with another HLHS mom and she has been a great resource and friend ever since.  The Lord truly directs us in our lives.  I know that to be true.

After meeting and talking with Alli, we have also had the experience to meet with other heart families.  There is something that bonds you to these people who have been through something so difficult.  I have so much respect for others who have had a heart baby or who have lost a baby.  Their strength truly strengthens me.

Lastly, my pregnancy.  I can honestly say that I have loved being pregnant with Ethan.  It has been a very easy pregnancy, health-wise.  I have a had minimal symptoms and have been relatively comfortable the whole way through.  Even now, at 39 weeks, I am more comfortable than I thought I would be.  I don't know if it's because I built it up to be really really terrible, or because I have been very very blessed.  It's probably both.  But I also know that a part of it is because I know I will miss it so much.  I will miss having Ethan with me 24/7.  I will miss feeling him moving around all the time.  I will miss knowing that he is doing okay.  I have so many mixed emotions about delivering Ethan because I am so excited to meet him, but I also know it is the beginning of the end.  We have no idea how long we will get to spend with Ethan on this Earth, but we do know there is a very small chance it will be longer than 9 months.  If he makes it to his Glenn procedure (the second open-heart surgery, 4-6 months old) then his blood flow to his lungs will go from "active" to "passive."  Meaning his heart will no longer be pumping blood directly to his lungs, but should flow there on its own.  But because of the damage done to his lungs due to his intact atrial septum (IAS), this will not work out for Ethan and he won't do real well after this procedure.  Who knows what will come in our future with him.  There may be other, better options for him when the time comes, but my point is that the 9 months that I have carried Ethan will probably be the longest time we have with him and the most memories that we have created.

I used to have a really negative opinion about maternity pictures. But pretty much every mom I've talked to who has lost their baby said that they wished they would have taken more pictures of themselves pregnant.  I followed their advice, knowing that I may not love them, but it was something that I would never be able to get back.  I hope that these pictures will help me remember what a blessing it has been to carry this special baby for the past 9 months.  My sister set me up with an amazing photographer, who is a friend from church.  I left her watermark on several of the pictures because she did such a great job (with us goofy people she had to work with).  If you want her information, let me know.  We are so thankful that she was willing to take these special pictures for us.














Ha ha ha, I had to add this last one.  If you know Jeff, this picture makes so much sense!  Natalie said to look at my belly, and this was his reaction.  He makes me laugh, all the time.  I am so grateful for that!