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!




Monday, September 16, 2013

Optimism

So we are coming down to the wire here.  Two weeks from today Ethan will be making his grand entrance into the world.  TWO WEEKS.  September 30.

The plan is to go in the night before (the 29th) at 6pm and start the process with a medication that I can't remember the name of. On Monday morning they will start giving me pitocin and Ethan will be born at some point during the day.  The cath lab at the hospital has been blocked out the entire day for us.  No one else can even schedule anything on that day.  And the doctor who will be doing the procedure on Ethan has given his cell phone number to pretty much everyone in labor and delivery so he can be updated.  It makes me feel good to know that we are so well taken care of.  Dr. B told us at our last appointment that they are constantly thinking about and talking about our case.  He said that he knows we have spent many many hours at his office and at the hospital the past few months, but for every hour we've been there, there has been hours and hours of discussion and research "behind the scenes."  We are so blessed.

Friday we had another round of appointments.  I first went and saw my OB.  They did the normal checks and set of questions.  Things are going well with my pregnancy.  I am currently 38 weeks. (FULL TERM!) Baby Ethan is growing well, has a good heart rate, and moves around all. the. time.  My blood pressure is good.  And I haven't dilated at all yet... YAY!  I know I would be super paranoid if I had.  (I already am a tad bit paranoid about going into labor early.)  I know lots of women can be dilated a little bit for weeks, but that is not something I want to worry about.

Then we had our cardiology appointment.  Ethan was moving around so much during his fetal echo that the sonographer was having a hard time measuring the pressure in his decompressing vein (the most important part).  Think about trying to thread a needle while riding a roller coaster... that's what she was trying to do.  She did manage to get a couple good reads on his vein though.  One at 5, and one at 4.  That is the same and even a tiny bit lower than last month.  YAY!!!!!!!  When we talked to Dr. B he said that there is reason to be optimistic.  It is good to be realistic, but there are a few things Ethan is showing us that give us hope.  First is this decompressing vein.  I've mentioned before that this vein is a miracle for us.  Without this vein there is really no way for blood to get out of his left atrium.  This vein gives him a chance.  Right now it's not perfect, but they are optimistic that after he is born they can take him to the cath lab to stent this vein and open it up a little more.  This will hopefully give the blood in his left atrium a good route to escape.  The other reason to be optimistic is how well Ethan has been doing in utero.  Each time they see us they take all different kinds of measurements to see if he is in distress or going into distress (blood pressure, heart rate, umbilical blood flow, etc.) and so far they have seen no signs that he is in distress at all.  Plus, he moves around like a crazy person 24/7, which is great for my peace of mind.  These things give us hope that we will have a little more time with him after he is born.

As always, thank you for your prayers.  I KNOW that they are helping Ethan, us, our families, and his wonderful team of doctors.  Thank you for your kind words and encouragement... that really helps keep us going.  We love you all!!