Friday, June 24, 2016

27 days out (6/24/16)

This morning Jase asked about Korban.  It's pretty common really; for him to bring up his brother.  He randomly will ask, "Is Heaven a person or a place?"  He likes to play with my bracelets and tell me which one is for Jase and which one is for Korban Matthew.  He has said to me a few times, "If you don't eat good things, you won't grow like Korban."  Even if what he says doesn't make sense or actually apply to Korban, for the most part, it makes me feel good.  My heart feels like it grows a little when Jase says Korban's name.  I love that he isn't afraid to talk to me about him when he needs to and hope that never changes.  But this morning was a little different than our other conversations.

We had just pulled out of the subdivision on our way to daycare and he just randomly asked, "Who has angels in their house for Korban?"  I reminded him that we have one and we gave one to Aunt Amy & Uncle Matt, one to Grandma and Mark and one to Grandpa and Cindy.  He asked why we need the angels and I told him so we could all remember Korban forever.  And then he asked, "If Korban lived with us and slept at our house, we wouldn't need those angels would we?"  His eyes welled up with tears and he tried to fight them away.  I reached back and held his hand and told him it's ok to be sad and that I get sad too.  He told me he misses Korban and then the tears fell while I rubbed his hand and told him I miss Korban too.  To which he replied "and Daddy does too."  My heart felt like it was going to burst out of my chest, but in true 3 year old fashion he moved on to a different subject within seconds.  I'm jealous of his short attention span as I am still struggling hours later.

I think about Korban and that entire experience from the time I get up in the morning to the time I go to bed.  Every single day.  Work does a pretty good job of keeping my emotions in check because we are really busy, but Fridays are harder because I'm alone in the office a lot and it's easy to lose focus.  Weekends with Kiel and Jase are always helpful...it's summer so we're always on the go and being together is just better in general.  Even in the evenings I can usually keep myself occupied with stuff around the house or some mindless tv and the nights Kiel has worked over haven't been near as haunting as I anticipated.  But it's always there.  On the tip of my tongue during every conversation regardless of the topic.  It's easier with people that I know are aware of the miscarriage, but I have a harder time with people who don't know or if I'm unsure if they know.  I don't know if I'm holding myself back from bringing it up or just trying to focus on anything else.  I do know, when it does get brought up, it's usually really easy for me to talk about it with anyone.  It's almost therapeutic sometimes...but as I type that I'm cringing just thinking about the next person I see mentioning it.  Mostly, I feel like I'm doing really well (Kiel too, but I don't want to speak for him on here)...I'm getting back to our life.  But today, my emotions really caught me off guard.  They are hard to reel in.  Not just because Jase's heart was hurting which always hurts me but because it made me realize how much mine still is too.

Writing all of this down seems to help a little though.  Even if I'm only typing for me...it still feels like I'm getting something off my chest.

I came across this article yesterday and think I might need to keep it close for awhile...

http://www.huffingtonpost.com/entry/the-things-you-learn-after-your-child-dies_us_576987d0e4b0869377fb4680?  
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While in the hospital, we made the decision to cremate Korban and on Wednesday, June 1st we got to bring home his ashes.  Kiel and I knew from the beginning that a service just wasn't something that we wanted to do.  I can't really explain why, but for us...I just don't think it would have been helpful.  Maybe under different circumstances, but I don't regret it.  I'm still in awe of the funeral home in Normal that donates all services for miscarriages/stillborn babies...what a selfless act.  The urn he came in is very plain and simple and not one you'd typically display, but it has his name on it so I'm not sure if/how I'll replace it.  We talked about a plot, but thought cremation would be better so he can be wherever we are.  When we're ready to buy plots for ourselves, he can go with us.  Always.   

Kiel and I met with Dr. Dalton on June 15th for a follow up appointment and she had our test results from the genetic tests they ran.  Apparently, instead of Korban getting one set of 23 chromosomes from me and one set of 23 from Kiel for a total of 46 (diploid set = the correct amount), he got an extra set of maternal chromosomes which is what caused the chromosomal disorder and led to the Holoprocensephaly.  Having 3 sets of chromosomes is called Triploidy.  It's mind blowing to think about how much happens inside a woman's body when a baby is made...everything has to be perfect and this time it just wasn't.  She said the results did not show chromosomal abnormalities in me that would necessarily carry over to a baby so concern for this happening again is low, but she advised we see a genetic counselor just so we can get all of the information we can from an actual expert.  And also to get some DNA from Kiel as no blood was taken from him initially.  We agreed and requested they start a referral for us even though we both have felt like this would be the case since we already have a healthy 3 year old.  Unfortunately a few days ago, we found out my insurance doesn't cover any of the testing and they can't get us in to meet with a genetic counselor until the end of October.  Both of those pieces of information were very disappointing, but we'll just have to see how things go.   

Dr. Dalton shared a story about a couple that gave birth to a baby the weekend after we had Korban and I haven't been able to stop thinking about them either.  Like Korban, their baby had Holoprocensephaly and like us, they found out about his disorder at their 18 week appointment.  Unlike us, their baby made it to 31 weeks before passing away.  That means they sat on that news for 13 weeks before delivering their stillborn child.  For 13 weeks they agonized over what would happen to their baby while everyday taking care of their toddler and trying to live their lives.  And when he was born, he wasn't much bigger than Korban who was measuring somewhere between 13-15 weeks.  I thanked God right then and there for giving that couple a child before having to experience that nightmare.  I hope he helps them through like Jase does for us.   

-Nicole

Monday, June 13, 2016

P2 - 18 Weeks

This is not the post I was planning on writing.  It's long and full of hard to swallow information, but just like the rest of the entries in this blog...this is part of our story.

Wednesday, May 25
As Dr. Dalton looked over the baby at our 18 week appointment, I could see the red flags.  The measurements in the lower right hand corner of the screen coming up 15, 14, 13 weeks instead of 18.  The 3 lines in his brain and how the shape of his head was long and skinny instead of nice and round like it was in the first ultra sound pictures we received.  I could hear it in her silence and that feeling I've had in my gut since week 8 was stronger than ever.  She didn't have to answer when I asked her if everything else looked ok after we heard the strong 143 bpm heartbeat...I already knew it wasn't. 

I don't know if I'll ever be able to explain that feeling.  I said to Kiel very early on that I was afraid of the possibility of there being something wrong with our baby and like any normal husband he told me not to worry about that kind of stuff.  So I kept my thoughts to myself because I didn't want to think about it either, but I was noticing things.  My body was making room for the baby...my hips were widening, my stomach was protruding and as each day went on, I would be full from dinner & water retention, but I could tell the baby wasn't filling up the room I had created for him.  I had been unconsciously gravitating to articles about special needs children - mothers urging other mothers to teach their children not to be afraid - how to get through the hard days - why to be thankful etc.  My head and my heart were telling me there was something wrong.  And as Dr. Dalton held my hands and prayed with me with tears in her own eyes, the realization that I may have been right really sunk in.

She carefully explained to me that the lines on his brain were from fluid build up and that he was very small.  She told me instead of a 4cm pocket of amniotic fluid, there was only about 1cm surrounding our sweet baby and this caused her to worry about blood and oxygen flow.  She said instead of waiting until 22 weeks to go to Maternal Fetal Medicine in Peoria to check baby's kidneys like Jase's, we'd need to go right away.  They would call us.  She was kind and gentle and overly apologetic that she didn't have specific answers for us and that I was bearing all of this information alone.  Just like when we had Jase, we had skipped the genetic testing at week 11 because my insurance didn't cover it and we thought the results wouldn't matter anyways.  Had we known, rather had we actually thought all of my fears would come true, Kiel would have been there.  But this was supposed to be a routine visit.  The exciting one where we confirmed the sex - she'd put it in an envelope for me because Kiel was in Transformer School and couldn't be there.  I was going to have someone at Party City fill up a balloon with the correct color confetti so we could pop it over Jase's head later...he was so excited.

Instead I cried to Kiel in the car and then my sister and then my mom and then Kiel some more.  Kiel tried to finish a little of his class before leaving around 1 so I went back into work until around 2pm...I just couldn't go home and be alone.  Dr. Leonardi's office called that afternoon and requested we come Friday to have a level II ultra sound done at 11:15 and then meet with Dr at 12:30 to review.  That night, Kiel and I discussed terrifying situations...decisions we could be forced to make.  Our minds were spinning, but we tried to be patient before getting too ahead of ourselves.   

On Thursday, Kiel took his test to finish up Transformer School and I threw myself into work to keep my mind as busy as possible.  It was a blur of a day for both of us.  I prayed a lot that night.

Friday, May 27th
We didn't wait long after arriving before I was taken in to report medical history and sign billing/HIPPA paperwork and then we were both taken to a room for an ultra sound where we waited just a few minutes for the tech.  I kept thinking...I can't see him...it's so blurry.  The measurements were coming up very small again.  When she said, "I'm going to go talk to the doctor for a minute," less than 10 min after she started...we knew.  It seemed like an eternity before he came in and I was in tears anticipating the worst.

Dr. Leonardi, a soft spoken kind man, entered the room and did a quick ultra sound of the baby before asking us to talk about a few things.  He told us our baby had "Holoprosencephaly" which is a condition in which the brain does not divide into two halves. During the embryo stage, when the top of the spinal cord folded backwards and forwards over itself to form a brain, the brain failed to split into a right and left side.  He assured us multiple times that there was nothing we did wrong or could have done to prevent this.  It probably happened before we even knew we were pregnant.  It just happens sometimes. 

And then, as he sat in front of us with his hand on my knee looking directly at me, he told us, "the baby has passed away."  In our hearts, we knew...but the confirmation was a weight neither of us was prepared to bear.  Kiel was so strong for both of us.  I've never cried like that before.   

He gave us just the right amount of time alone for me to pull myself together while Kiel sat next to me on the small hospital bed.  He told us that the baby had probably passed sometime the day before (Thursday) and that I would need to deliver him sometime in the next week.  We were numb.

He gave us great advice on how to take care of each other while we were grieving and moving forward.  He warned us that miscarriages are hard on marriages and that our friends would be terrified of our situation because now it would feel like this could happen to them too.  He said no one would know what to say...we wouldn't know what to say.  He talked to us about DNA testing that would give us more information regarding future pregnancies.  It was so much to take in, but he was wonderful with us.  The man deserves a medal for having to deliver that sort of news.

The walk out of the hospital was excruciating. All those people to walk by. All those eyes on us.     

I know Kiel would have gone along with whatever I wanted, but I think we both knew before I said it that we wouldn't wait to start the induction.  Jase was at my sisters and we wanted to get back to him as soon as possible.  I hated to use the phrase "get it over with" but we'll be grieving this baby for the rest of our lives...why put ourselves through the emotional pain of waiting all weekend knowing the end result will be the same regardless of timing?  Everyone is different, we just felt this is what was best for us.

After a few phone calls, we found out Dr Dalton was out of town until Saturday afternoon with her family, but Dr. Nord was willing to oversee the beginning of the induction.  Dr. Dalton warned me it could be a long slow process - possibly taking my body 24 hours to respond to the medicine.  Even more of a reason for us to begin as soon as possible, but that also offered the possibility of her being there at the end depending on how things went.  She told me that I would be given 4 pills of Cytotec vaginally every 4 hours to soften my cervix instead of pitocin through an IV like I had with Jase.  I would be allowed an epidural whenever I was ready, if desired, or Nubane every 1-2 hours for pain.

Kiel, my mom and I checked into the OB wing at BroMenn at 7pm and I got my 1st dose of Cytotec around 8:45pm.  Our nurses were Bekah & Abbie and we all quickly realized they were going to be wonderful even though the atmosphere was painfully different than when Jase was born.

The rest still feels like a dream. 

9:30pm:  Dr. Nord poked his head in to introduce himself and let us know he would be around if we needed anything.  He's very tall and didn't have much to say and we knew the nurses would handle everything at the beginning but it was reassuring to know he was available if needed.

11:00pm:   A Chaplin stopped in to see if she could assist us in anyway and offered to say a prayer with us.  I'm not going to lie...even though I said I'd like her to come when they asked, I was slightly annoyed at her presence at first.  Another stranger in the middle of this nightmare, but when she pulled "Footprints in the Sand" out of her pocket which had hung in our home for years...it seemed so fitting.

Saturday, May 28th
Midnight:  I was getting pretty uncomfortable from the cramping so I went ahead and asked for some Nubane.  As Bekah was administering it into my IV, my water broke so we were hopeful my body was responding.  Kiel finally fell asleep after we got my bed changed and Bekah left.

1:00am:  2nd insert of Cytotec.  The Nubane made me pretty sleepy so my mom decided to go down the hall to a waiting room where they had a bed set up for her.  I never went to sleep, but was relieved Kiel and my mom were getting some rest.

2:00am:  I requested a 2nd dose of Nubane and finally slept for about an hour and a half.

5:00am:  my mom came back into the room just as I was about to receive my 3rd round of Cytotec and 3rd dose of Nubane.  Bekah checked me and I was at a one, but barely, so it seemed like things weren't really progressing.  I was seriously considering getting an epidural, but since I knew I wouldn't have to dilate to much more than a 2 or 3 since the baby was so small, I was really hesitant.  Plus, I was worried they would make me stay longer if I went ahead with one so I decided to push on without it and just stick to the Nubane as long as I could since it seemed to be at least taking the edge off.

I must have dozed off shortly after that last dose of Nubane because the next thing I remember is Dr. Nord coming into the room just before 6:30am.  He was just stopping in to say good morning and see if we needed anything.  He offered to say a prayer with us and I could feel his sincere compassion for us and our baby in his words.

When he left, I got up to use the bathroom and as soon as I stood up, my water broke.  It caught us all off guard since we thought that had already happened the night before.  A few nurses came in right away to get everything cleaned up.  As I walked to the bathroom, I remember thinking the pain was going to get kicked up a notch now that my water had broken...

6:45am:  Instead, without any warning, just seconds after I sat down I delivered.  It was so fast and unexpected and painless and very heartbreaking.  It took my breath away and all I could do was yell for Kiel.  It was like my body just did what needed to be done.  Nothing could have prepared me for that.    

I don't think I'd even really grasped that it was over before I was back in the bed. The nurses were immediately tending to the baby and trying to call Dr. Nord back in from just down the hall.  He seemed just as shaken up as we were because he apologized for leaving the room not knowing I was in such distress.  I assured him I wasn't...I had no indication that was about to happen until it was already over.  He looked at Kiel and said, "I didn't expect God to answer my prayers so quickly."  His words will probably stick with me forever.

Bekah brought the baby in on a small white washcloth and handed him to me.  Kiel was hesitant to see him, but I knew we would regret it if we didn't.  He was so tiny.  1 oz, 7 inches long.  It wasn't until after they brought him back from being weighed and measured that we could tell he was a boy.  Just as we'd suspected.  His facial features were not very prominent, his head was very large and appeared flat compared to the rest of his body from the fluid on his brain.  He had big feet just like his dad & big brother and his toenails were wildly noticeable...of all the things.  We had planned on taking pictures, but as soon we saw him we decided against it.  Seeing him will be with us forever.  It's something that is just for us and is one of the main reasons I instantly felt so at peace with losing him so early.  It was very obvious that his quality of life would have been minimal if he would have made it to term.  But regardless of his appearance and health, he was still our baby that we had hoped for and had started making plans with.  We already loved him with all our hearts even though he never took a breath outside my body.

At some point Janice, who took over for Bekah, drew my blood to be tested for the baby's DNA along with the placenta so we could get some idea of the likelihood of this happening again. 

Dr. Dalton was scheduled to be in around 5pm that day and since they wanted me to stay for a few hours to monitor my bleeding, we were hopeful we'd see her.  We sent Kiel out to get some fresh air once things had settled down.  My mom and I made a few phone calls to let a few people know everything went well and my sister offered to bring us lunch.  I have no idea what time it was, but there was a knock on our room door and when it opened I expected to see my sister with lunch, but instead it was Lindsey all the way from Colorado saying, "I told you I'd be here in 12 hours."  Still puts a little lump in my throat that she just jumped on a plane to be with us.  My sister followed shortly with lunch and the atmosphere continued to shift more to the positive side.  They both stayed with us the majority of the afternoon.  The love in that hospital room could have moved mountains.

The rest of the afternoon went quickly and around 2, after Janice had checked my bleeding once again, I asked about being discharged.  The nurses were pleased with my recovery progress so Dr. Nord agreed to let us go home.  The timing worked just about perfect for Dr. Dalton to arrive just as my mom and sister were leaving the parking lot.  We could tell she was out of breath from literally running to our room...we were her priority and it was obvious.  We told her about the day and how wonderful our nurses and Dr. Nord had been.  She confided in us that when I was in her office on Wednesday, she was shocked the baby still had a heartbeat because of the condition he was in.  I can still see the pain she felt for us in her eyes.  We really were surrounded by the best that day.

There was literally nothing left for us to do after she left but go home to recover.  No baby to take home.  Just us.  So less than 24 hours later, we went home to clean up and Kiel went to get Jase from Amy's.  Telling him ranked almost as hard as getting the actual news...

Kiel wanted to wait so we had a little time with him before crushing his world, but about 2 minutes into dinner Jase made a comment about the baby eating what mommy eats.  He talked about the baby all the time...he was so in love with the idea of being a big brother and "our baby" as he referred to him.  I took him into the living room and sat him in my lap on the floor and just told him that we weren't going to be able to bring our baby home.  That he was going to be with Jesus.  Tears immediately started flowing from his eyes...it was heartbreaking to watch him process our new reality.  He just kept asking why he couldn't live with us and why he wouldn't ever come back as the tears rolled down his face.  Kiel explained it perfectly to him by saying "He just wasn't strong enough.  He didn't grow."  I tried to reassure him that he was still a big brother even though his little brother wouldn't live with us.  We told him his name and he was so excited that our baby was a Pshak too :)  He was sad when I told him I gave the baby one of his blankies, but quickly changed his mind and said, "I think that was a great idea mom."  Such a brave, smart boy we have.  He is the best therapy we could ask for. 

I wonder how long it will take me to get back to feeling like myself.  How long it will take me to have a meaningful conversation that does not involve our miscarriage.  How long it will take me to not tear up at the harsh realization that I am no longer pregnant. Someday we will take that plunge again, but right now I have to figure out how to be ok with this empty feeling that seems to come in waves and knock me down like I've run into a brick wall.  Miscarriages happen every day.  To so many people we know, some that we had no idea about before now.  We now feel the weight of that burden first hand...it's indescribable.   

Fortunately though, even through all of this heartache, we have been able to realize we have so much to be thankful for.  We are thankful that we didn't have to make any decisions on our own.  We are thankful for a smooth delivery.  For the knowledge that our baby never suffered.  For a support system that is never ending and breathtaking.  For each other and our intelligent, healthy 3 year old.  I pray Kiel and I can be our best for Jase and our marriage going forward and not lose ourselves in this misfortune while still remembering and honoring the tiny life I carried inside me for those short 18 weeks...

One day at a time.
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Korban, 

We chose your name because of it's meaning - "A gift or offering consecrated to God" - which is exactly what you are.  Your middle name is after your Uncle Matt and your initials are the same as your father's.  The blanket you carry with you is one of your brother's most prized possessions.  You are wholeheartedly part of and attached to our family no matter where your spirit lives.  You were and will always be loved more than you will ever know.   

Thank you for making this as physically painless as you possibly could...I know you walked me through this.  I know you used the last of your strength to keep your heart beating that day I was alone so your dad and I could be together when we learned we had lost you.  I know now that you were that Cardinal at my work the day you left us.  Please continue to watch over us.   

You will be in our hearts forever and I will count the days until I see you again.  Rest in peace our sweet boy.
             
 

                      
Korban Matthew Pshak
"A gift or offering consecrated to God" 

Delivered May 28, 2016
6:45am 
1 oz, 7 inches


"Little Footprints" by Dorthy Ferguson
How very softly 
you tiptoed into my world.
Almost silently,
only a moment you stayed.
But what an imprint
your footprints have left upon my heart.

 


Love you, Love you
Mom, Dad & your adoring Big Brother, Jase