Sunday, May 18, 2014

A Year Ago

A year ago is when our lives changed forever.  I remember driving home from my parents house the evening of Mother's Day last year and telling Jeff about a friend of mine who was going through a very difficult trial with her children.  We were so grateful and happy that we were expecting a baby boy in a few months.

We had a follow up ultrasound from our appointment the previous week when we found out we were expecting a baby boy.  They said last week that they couldn't get a good look at his heart because of his position.  They asked us to come back in a week.  This appointment was not as quick as I was expecting.  After looking at our baby's heart silently for 30 minutes, the sonographer went and got another sonographer.  She looked around for 10 more minutes and they said, "Okay, we'll show these pictures to your doctor and we'll go from there." Although they couldn't tell us if something was wrong, I left this appointment feeling very unsettled.  I tried to live life normally, but I was pretty sure that what they saw was not normal.  I even went home and Googled ultrasound pictures of 20 week old hearts.  I was pretty sure that I had only seen two chambers on our ultrasound. 

I waited all day for a phone call from my doctor.  ... Nothing....

Another waiting day.  By the afternoon I started to feel a little better about things.  I tried to rationalize that if there was really something seriously wrong, they would have called by now.  But the next thing I knew, I was getting a phone call from my doctor.  She asked if I had been notified of the ultrasound results yet and apologized when she realized that it has been almost three days since the appointment.  She said that what they were seeing was an "underdeveloped left ventricle" in our baby's heart and that we'd be referred to a maternal fetal specialist for further care.  As soon as I got off the phone with her I called Jeff and told him what I'd heard.  I then called the MFS office and set up an appointment as soon as possible.  Thankfully they had an appointment the next morning at 8:00am.  I then started googling the phrase "underdeveloped left ventricle." I mostly found a syndrome called "hypoplastic left heart syndrome." I thought that this was most likely what we were dealing with.  I found that it was a survivable, but very serious congenital heart defect.  We would have a very bumpy road ahead and would most likely out-live our baby boy.  Talk about devastating for new parents!  But we still weren't sure.  What if it's not as bad as we think.... What if it's worse than we think.... What if it's exactly what we think.... I had so much anxiety going through my body.  Jeff came home from work early so we could be together and my family came over in the evening to be with us.  We cried together, prayed together, and received priesthood blessings. 

We were up early to go to our appointment.  My parents offered to drive us there since we really had no idea what state if mind we'd be in after the appointment.  They were such a huge support for us this week.  We went to the appointment where they did another full body scan of our baby boy.  The doctor came in afterwards and looked at all the pictures from our appointment on Monday, and from today.  He took another look himself as well.  He then talked to us and let us know that our baby's official diagnosis was HLHS.  We asked many many questions about what our future would hold, but he wasn't quite sure.  He said that he just deals with the pregnancy side of this, which usually goes pretty normally.  He referred us to a pediatric cardiologist who had an available appointment tomorrow morning.  He said that he would be able to answer more of our questions.  The rest of the day went by in a blur. 

Our meeting with the pediatric cardiologist was early in the morning.  We actually got there before the office was even open.  We must have been a little anxious.  At this appointment we had a fetal echocardiogram to get some more details about our baby boy's heart.  They looked at every single valve, ventricle, and vein.  Keep in mind that the baby's heart at this point was about the size of a!  After the very long fetal echo, we waited in an exam room for a while.  As we waited they brought us snacks and water.  Dr. B popped his head in at one point and apologized for making us wait.  He was trying to wrap up a few things with other patients so he would have enough time to have a full conversation with us.  He knew it wouldn't be quick.  You see, we were kind of a last minute appointment, but they knew it was an important one, so they squeezed us in.  So once Dr. B had some free time he came in and talked to us.  He confirmed the HLHS diagnosis and told us our baby boy had another complication along with it.  He made us feel very comfortable with our situation.  He gave us a great amount of background knowledge in heart anatomy.  He answered all of our questions.  He left us with a feeling of peace.  We left that appointment still devastated, but somehow peaceful.  And completely grateful that we were in his care. 

And from then on our lives would never be the same. 

Friday, March 28, 2014

Big Days and Pinwheels

Dear Ethan,

Guess what?  Today was a big day.  We finally went and designed your headstone.  I'm sorry it has taken us so long.  Grief played a role in that.  I was a little bit afraid to go back and open those wounds that are gradually starting to heal.  I was also a little bit sad to close the door on that part of our lives.  I think the procrastination came mostly from the latter of those two.  In a way, having something on my to-do list that was Ethan-related made me feel good... made me feel closer to you somehow.  It's weird, but I will really miss that once we are done with this process.  Anyway, I think you will like what we've picked.  We still need to edit and/or approve the proof, which we should get to see in about a week.

You have another big day coming up too!  Your 6 month birthday will be on Sunday.  All of your family members here in Colorado are planning on visiting your special place on Sunday afternoon.  We have some more pinwheels for you.  It should be a beautiful warm spring day and they will look so beautiful spinning in the wind.

Pinwheels have kind of become your "thing" over the past 6 months.  It all started when Grandma Kirk asked us to find one for you in the fall when she was here.  Well, finding a pinwheel in the fall is not an easy task.  I would look in every store I happened to be in.  I did find a teeny one in Hobby Lobby one day, so that is the first one you ever had.  I put it by your grave in October (I got an orange one for Halloween) and it's still there today.  It's faded and not spinning so well anymore, but it's still there!

I gave up on looking for pinwheels for a while after that.  Then one day in February (when we were visiting your Aunt Marie and family in Arizona) I saw pinwheels at Joann's.  I was so excited to finally see a REAL pinwheel and get one for you.  I knew the Joann's in Colorado probably had them too, but I wasn't going to take that chance.  I even carried it on the plane ride home so it wouldn't get squished.  Your dad was teasing me about being a kid with a toy on the plane, but I didn't care.  (Okay... maybe I was playing with it more than just carrying it....)  Anyway, we gave that one to you on February "30th" and it's still there too.

Your Aunt Christy, Uncle James, and cousin Miles are here visiting this week.  (Remember your cousin Miles?  I'm sure you guys have been best buddies for a long long time.  He reminds me so much of you.  You two have the same chubby little cheeks.  It would have been so fun to see you two boys grow up together.)  When they came from Ohio, they brought you a pinwheel for you too.  We will bring it to you on Sunday.

We got a package from your Aunt Marie, Uncle Manoj, and cousins Misha and Maddie.  It came today and was sitting on our front porch when we came home from the cemetery.  It was filled with pinwheels for you.  We will bring them on Sunday too.

And I know your Grandma Bateman has a big blue gingham pinwheel for you too.  Your grave will look so festive on Sunday!  Everyone who sees it will know what a special little boy you are.  And how loved you are by so many people!

I also made a spring wreath in honor of you.

Are we going a little overboard on the pinwheels lately? ....maybe....

Well Baby Boy, I can't believe we've lived without you for 6 whole months.  In the beginning I didn't know how we'd survive just one day without you.  Then a day became a week, and then a month, and here we are half-a-year later.  We think about you and miss you everyday.  You have made us better people.  You have touched so many lives.  You are so so loved!

Can't wait to see you again one day.


Thursday, February 20, 2014

Ethan's Birth Story Part 4

The next thing I remember is Dr. M, Dr. H and Jeff walking in my room.  My heart dropped.... This can't be good.  But Jeff looks okay.  It doesn't look like he's been crying.  Where is Ethan?  Who is with him?  I thought the surgery was supposed to take longer than this.  This can't be what I think it is.  Ethan was so healthy.  Why are they here?  All these thoughts and more flew through my mind between the time they walked through the door and stood near my bed side... probably 15 steps, 10 seconds.

But the looks on their faces said everything.  The first words out Dr. M's mouth were "I'm very sorry."  I don't remember the exact words he used after that.  It was all a blur.  But I do remember him telling us that they did all that they could, but Ethan's heart and lungs were not able to keep him alive.

Dr. M asked us how we wanted to inform our family.  He offered to tell them if we wanted him to.  We accepted his offer.  I didn't think I'd be able to get the words out.  They worked on gathering our family into a L&D room near mine, while Jeff and I had some private time to ourselves.

We cried.

And cried.

And cried.

A few minutes later, one of the NICU nurses brought Ethan in the room.  Jeff and Ethan and I were able to have some alone time with Ethan.  We studied all his sweet features.  We held him, kissed him, and squeezed him.  He was so so perfect.

After a while, we asked the nurse to bring Ethan's grandparents in.  Each of them had a chance to hold their sweet grand-baby.  We cried and talked about how special he must be.  Meanwhile, the hospital staff did their best to take care of our families.  They allowed them to stay in the L&D room near mine and they brought them snacks and fruit.

Then we had the rest of the family come in our room a few at a time.  They all got the chance to meet Ethan and give us hugs.  There was not a dry eye in the room.  By that point, the anesthesia was really wearing on me and I could hardly keep my eyes open.  But I knew how special this time was and I didn't want to miss a moment of it.

Around 8pm our families headed home.  I decided to get some rest while Jeff and a nurse from the NICU got hand and footprints of Ethan.  Then my L&D nurse came in to tell us that the photographer would be coming at 9.  I wishfully said, "9 in the morning, right?"  But she said "No, 9pm... in about an hour.  Ethan will look best tonight."  My heart sank a little.  How am I supposed to take pictures after all this?  But I knew that the hospital staff had done this many times and if they said Ethan would look best in his pictures tonight, then we'd better do them tonight.  I slept as much as I could while Jeff and the nurse gave Ethan a bath and made him look his best for his pictures.  Then Jeff helped me brush my hair so I could look decent for the pictures too.  

Right at 9pm, the photographer came in our hospital room.  He asked us if we had any wishes for these pictures.  I told him a couple things that I had seen that I liked and then he took several wonderful pictures of Ethan.  We were able to use the afghan that my grandmother crocheted in the pictures.  She had made it for us for when we would bless Ethan.  But I think this was good use of it too.  And I love that now we have such a special blanket for our future children.

(Funny story:  Right as we were getting ready to take the family picture I felt a rumbling in my stomach.  I couldn't move fast enough, so I just started shouting, "barf bag, barf bag!"  Jeff luckily grabbed one in time, but the photographer had to leave the room.  It only took a few moments before I started feeling fine again so I told the nurse she could go get the photographer.  I guess he told her, "I knew if I didn't get out of there, I'd start doing it too!"  Oops, sorry...)

After our photo shoot, Jeff and I were left alone.  The nurse I had this night was so tender, kind, and compassionate.  Exactly what I needed.  She told us that we could have Ethan as long as we wanted, but that she could take him at any time.  And if we changed our minds she could bring him back.  She also told me that they would be leaving me on this floor until I get discharged.  (Instead of moving me up to the recovery floor with all the new babies.)  Wow, how wonderful!  I didn't even realize how hard that would be and I'm so glad they thought of that for me.

By 10pm Jeff and I and Ethan were asleep.  What a long/crazy/important/life-changing day.

Wednesday, February 19, 2014

Ethan's Birth Story Part 3

At 3pm they started the pitocin (at level 1).  We waited.

By 3:30 we could tell that Ethan's heart was decelerating after each contraction.  He was not able to tolerate labor, so they immediately started prepping me for c-section.  It felt like a whirlwind happened and the next thing I knew we entered the OR.

It was 3:58.

They gave Jeff a place to sit and asked him if he brought his camera.  ...blank stare... oops.  We were so rushed and caught up in the moment that we hadn't even thought about it.  Luckily Megan was there and had her iPhone with her.  She offered to take pictures for us.

As I was laying there and they were working on me, I couldn't believe it was really happening.  I could not believe that in just a few minutes we would get to meet our special baby boy.  I could feel them working on me, but I felt no pain... so strange.

Then, at 4:15pm Ethan was born!  He surprised us all with his ability to cry.  The doctors took him aside in the OR and checked all of his stats.  I could hear them shouting out numbers and wept tears of joy when they announced his oxygen level was 66%.  Sixty-six!  So good!  Megan was going back and forth between taking pictures of them working on him and coming over to show them to me.  Jeff was holding Ethan's hand as they worked.

We found out our baby boy was 7lbs 3oz.  He was 21.5 inches long.

One of the nurses brought Ethan over and laid him on my chest.  She told me that his skin looked pretty blue, but we were all expecting that.  His APGAR score was 8.8/10.  She told me that the only thing that was wrong with his score was his color.

I can't even describe what it was like to see my baby boy and "hold" him for that moment.  So special and so sacred.

The nurse told Megan to snap a picture, ordered me to kiss his cheek, and then she took him away.  How long was it, probably 30 seconds?  Maybe less?  I felt like I could hold him forever, but I was also mindful that he needed to get to surgery right away.

I breathed a huge sigh of relief.  I was confident that if Ethan was so healthy at birth, he would surely make it through his surgery.  After that we can navigate the bumpy road ahead.

So Jeff, Ethan and his team of 11 doctors and nurses walked though a gauntlet of 20 family members lining the halls, headed to surgery.  They were all hoping to catch a glimpse of our precious baby boy.  (Dr. M later said that he'd never seen anything like that before.)  Here is a video of Ethan going to surgery.

Ethan was so loved!

Meanwhile, they finished stitching me up in the OR and took me back to my room to recover.  I wanted my mom and sisters with me in my room for recovery, but my nurse knew better.  She asked that I be left alone for a little while until I was more rested.  I remember my nurse, Kim, taking notes on the computer in my chart and asking me questions about how I was feeling.  I remember being exhausted and wanted to do nothing more than sleep, but I couldn't because I was freezing and shivering and shaking so bad.  (A side-effect from the anastesia, I guess.)

After "dropping off" Ethan at the cath lab for his procedure, Jeff came back to my room to change out of his "slim-fit" scrubs (as his brother called them).  We talked about how healthy Ethan was and how we were not worried about him at all.  We knew he would be fine and that he would make it through his surgery.

Then Jeff left to make his way back to the cath lab waiting room.  I tried to get more rest and hoped to see some of my family members soon.

Tuesday, February 18, 2014

Ethan's Birth Story Part 2

Looking back at our hospital stay, I can see how blessed we were.  I had all the right nurses at the right time.  My first nurse was a great teacher.  The nurse I had during the day of the 30th, Kim, was very experienced and taught me to be an advocate for myself.  She had no problems sharing her opinion, but wanted to make sure that I knew every decision was mine to make and no one else's.  It was also a great blessing that she happened to have no other patients that day, so all of her attention was focused on Ethan and I.

So when Kim came back from her lunch break at 1pm, she heard they were prepping me for a c-section.  She was shocked.  When she had left I was off pitocin and things were going okay.  But Dr. F had a different opinion.  

In Dr. F's mind, things were not going okay.  She basically sat down and told us this: 
It was apparent that Ethan's heart was not tolerating labor contractions well.  Every time we started the pitocin to progress my labor, he would go into distress.  But without pitocin, my labor was not progressing fast enough to get him here fast enough for his surgery.  Dr. F was also worried because my water broke a few hours ago, so we don't have time to wait.  Her opinion was that Ethan would not make it through labor and the only sure way to get him here healthy enough for surgery would be to do a c-section.  

I was very wary of doing a c-section.  All through this pregnancy we had talked to Ethan's doctors about delivering him vaginally.  There are many benefits for heart babies doing it that way, which I'm sure I've talked about on here before.  We hadn't talked through this scenario before.  (Plus I had watched "The Business of Being Born" and was aware of the viewpoint that some doctors are just in this for the money.  Not that I thought that was Dr. F's motive, but I was aware that that happens sometimes.  I didn't want to be a "victim" of that mindset.)  I was very apprehensive about going through with the c-section.  

The tears came.  What is going on?  We weren't supposed to have to make these difficult decisions before Ethan came!  The difficult part was supposed to come after.  What are we supposed to do?

Dr. F offered to give us time to think about this decision.  

First, we brought our parents in the room.  We talked through our options and our feelings.  It became apparent that we all needed some more information to be able to make the best decision for Ethan.  But one bit of advice that my dad gave was to be able to look back and know we did our best for Ethan.  He said that if we didn't do the c-section we may always look back and wonder if there was more we could have done.  

My mom worked to find Megan and find out if we could get a hold of Ethan's cardiologist Dr. B, who had been helping us through this entire process.  (He wasn't on call at the hospital that week, but he would have been there following week when Ethan would most-likely have been going through his first open-heart surgery.)  Making this decision didn't seem right without consulting him.  

Jeff and I asked to talk with a neonatologist from the NICU to see how Ethan might do if he was delivered by c-section and not vaginally.  

And my L&D nurse, Kim, was happy to share her opinion with us as well, and made sure we knew we were free to choose whatever we wanted.  

Dr. R (who happened to be the neonatologist we met with in August) was available and came down to talk to us.  His opinion was that Ethan would be fine because he had started to be prepped for birth by going through some contractions already.  He said that babies usually have difficulty with recovery if it was a scheduled c-section with no warning signs to the baby that it is time to come out.  But since Ethan has been through several contractions, his body was aware that it was time to come and he should be able to recover just fine.  Dr. R was more worried about me and my recovery.  He was worried that I would be going through a major surgery with a long recovery ahead for a baby who would probably not live long anyway.  But that part didn't bother me at all.  That was not a factor whatsoever, to me.  I would do anything to give Ethan the best possible chance to live.  

After several phone calls, Megan was able to get a hold of Dr. B.  Yay, Dr. B!  We love him!  (Have I mentioned that before?)  He was working clinic in his office that is about 70 miles away, but he was able to call us back within an hour to discuss options with us.  He talked to me on the phone and said that c-section vs. vaginal birth was not a big debate anymore.  The point now, would be to get Ethan out as healthy as possible and it looked as though that may be via c-section.  Our hope for a vaginal birth was the "best case scenario," but it seemed like that was not an option for us anymore.  

My L&D nurse shared her opinion with us that she thought Ethan was not doing too bad.  It's true, he was showing signs of distress, but he was not in distress.  She thought we could give him another chance with the pitocin.

Jeff and I talked to Dr. F and told her our decision.  We wanted to give Ethan one more chance, but if he was still not looking healthy through these contractions, we would be okay to go through with a c-section.  

They turned the pitocin back on at 1.  (Most women are on pitocin at 4 or 5 and they increase from there.)  Ethan did not do well at 4, so they had turned it down to 2 earlier this morning.  This time they tried it at 1.  They said if he still is not doing okay, we have no other options.  We would be heading for the OR for a c-section.  

Monday, February 17, 2014

Ethan's Birth Story Part 1

I am so glad to finally have a chance to write about this experience.  Just a couple days after having Ethan, I spent some time writing down everything I could remember from his birth day.  I'm so glad I did that.  Now I can spend some time writing it all out.  If you were following our blog that day, this may explain a few things in more detail.

Like my sister, Marie, said... We spent Sunday during the day at my parents house with all 22 of Ethan's guests.  We had a nice lunch/dinner, held a family meeting, took some pictures, and just enjoyed each other's company.

At 5pm, it was time for Jeff and I to leave for the hospital.  We were supposed to be there by 6pm to check in.  I remember the drive to the hospital being painfully silent.  Neither of us knew what to say to each other.  Neither of us knew what to expect.  Neither of us knew what was about to happen.

We checked into the hospital and they took us down to our room.  They had reserved the largest room for us, since delivery would include at least 9 doctors in the room.  Uh, yeah, that's a little overwhelming!  The only problem was that I was hoping to have a tub to use during labor and this room didn't have one.  But that was fine, they just saved the room next to ours for us to use as well, in case I wanted to use the tub.  (I never ended up using it anyway.)

I remember wanting to watch The Amazing Race at 7pm.  I was hoping to be all checked in by then.  But since the nurses changed shifts at 7:00, they waited until then to do all the chart check-in questions.  And by the time they were done with all that, we only caught the end.  Darn.  I was hoping to have something good to watch to help pass the time.

At 8pm they started cytotec.  This medication was supposed to help me get ready for labor, but not technically start labor.  The nurse I had this night was very good teacher.  She explained everything that was going happen to try and get Ethan here safely.  She explained all the monitors, all the medications, which doctors would be where and what they would be doing.  It was awesome and helped me feel more relaxed about everything.  The cytotec would last 4 hours, so the plan was to get another dose at midnight, and 4am.  Then at 8am, they would check to see if I was ready to start pitocen.

Well, Ethan was having none of that.  Right at midnight his heart rate dropped.  I was asleep, but I heard my nurse come in. And then I was confused because she wasn't alone.  Three other nurses followed her in.  They weren't running, but definitely walking quickly.  I wasn't sure if I should be alarmed because this was pretty unusual, but they were acting so calm.  All of the sudden I had 4 nurses all working on me.  They were talking to each other and at the same time trying to talk to me about what they were doing.  One nurse was trying to find Ethan's heartbeat, one was checking my cervix, one was putting the oxygen mask on me, and one was giving me medication in my IV to try and calm down my "contractions."  They weren't real labor contractions yet, more like cramps, but apparently they were still too much for little Ethan to handle.  Since they were giving me medication to slow down the process, I didn't get anymore cytotec at this point.  They eventually found Ethan's heartbeat again and left the room.  (Jeff slept through the whole thing.  Crazy kid.)

At 2am Ethan seemed to be doing okay, so they gave me another dose of cytotec.  I was able to sleep pretty well for the rest of the night.

The grandparents came to the hospital around 6am, I think.  It was so nice to have their support.  They all played cards while I rested.  My room was nice and big enough to accommodate all our guests.  I loved that!

Around 7am I met the doctor who would be delivering Ethan.  Since I had bounced around to different doctors during my pregnancy, this was my first time meeting Dr. F.  I had been told that she was very matter-of-fact and would not sugar-coat anything.  I learned that real quick when she was checking my cervix... I was pretty sure she was trying to kill me.  She was the opposite of gentle.  We did not get off to a very good start.

Dr. F said I was maybe dilated to a 1.  She was a little apprehensive about starting pitocin this early, but she knew we had to get Ethan out at a reasonable hour in order to get him into surgery.  If we did another round of cytotec we would have to wait another 4 hours to start the pitocin, which would have put us at 11am.  Dr. F was worried that would be delaying delivery too much so we decided to go ahead and start the pitocin.  Within a few minutes, my contractions got very intense.

Next thing I knew, Megan (our hospital coordinator) came in and brought Dr. M (the cath lab surgeon) with her.  We talked about the plan for Ethan's surgery after birth.  He said he would first try to open Ethan's atrial septum (the wall between his upper two chambers) to allow blood flow.  That was different from what we had thought.  We thought they would be trying to stent Ethan's decompressing vein first.  Dr. M's opinion was that opening up his vein would have a higher risk with more unknown results.  He said it would be like opening a new road, but possibly needing a highway to support the amount of traffic.  Basically, his little vein could easily be overwhelmed by the amount of blood needing to to flow through it.  He said opening his atrial septum would be a little more predictable.  We agreed with his opinion.

About an hour after starting the pitocin, my water broke.  What a strange experience that is!  After feeling "natural" labor contractions for about an hour, I decided I had had enough.  I got my epidural, and it was amazing.  Best invention ever.  And apparently I had a really good anesthesiologist because my nurses kept saying how perfect my epidural worked.  I couldn't feel pain, but I could still feel pressure.  They said that was the perfect amount.

At around 10am, Ethan started going into distress again.  His heart rate kept dropping with each contraction.  They decided to turn the pitocin off and let Ethan relax a bit.  My labor was progressing on its own, but very very slowly.  At this point I was only dilated to a 2.

Around noon, Dr. F came in to check me again.  I was a 3 and she was not happy with that.  She sat down and told us our options.  She said that it was apparent that Ethan 's heart was not tolerating labor contractions well.  Every time they started the pitocin he would go into distress.  But without the pitocin my labor was not moving fast enough.  She was worried because my water had already broke and we had to get Ethan out before too long.  She told us that she thought Ethan would not make it through labor and he would need to be taken by c-section.