Monday, May 2, 2016

Kevin's Life in Photos

Yesterday I updated Kevin's 25 week slideshow to show photos of his entire brief life with us.  I am finally beginning to come out of my fog after losing him but each day continues to be a struggle.  I thank God for the moments I had with Kevin and for answering my prayers to get to meet and hold him.

Thursday, April 7, 2016

Kevin's Birth Part 2 (Kevin's Story Part 14)

Before I knew it I had been wheeled back into the OR.  Since I had a history of getting severely ill after receiving a spinal it was determined that I would be operated on with the epidural.  It would be topped off as needed so I would be in a good condition to see Kevin when he arrived.

At this point all I could think about was meeting Kevin.  I wasn't nervous like I had been with the twins.  I knew that within a few minutes he would be here.  The one thing that I didn't like was getting my arms strapped down.  I hadn't experienced that during the twins delivery.

I was quickly prepped for surgery and Scott came back into the room.  Nothing that had come before mattered.  Kevin was on his way!

The minutes flew by and at exactly 12 pm Kevin was placed on my chest.  He was awake and moving and trying to cry.  I fought to move my hands to hold him.  Scott finally freed one of my hands and, for the first time, I was able to touch my baby.  At this point he was active and kept reaching for my face.  It was the best thing I had ever felt in my life.  As I stroked his head he briefly opened his eyes and looked right into mine.  I had already received all that I had prayed for.  Kevin had been born alive, I had heard him make a sound, and I got to look into his eyes.  Kevin opened his eyes so briefly that the photographer wasn't able to catch it in camera.  It doesn't matter because it is a moment I will never forget for as long as I live.

After this I lost track of all time.  I held him and told him I loved him.  I told him I was sorry.  I wished I could do so much more for him but I knew it was out of my hands.  I began to feel queasy and thought I might get sick so I asked Scott to hold him.  Kevin was now very limp and lethargic.  Scott held him and talked to him.  The photographer was able to get photos of the 3 of us together while the doctor worked on getting me stitched up.

Scott continued to hold Kevin and I kept reaching for him and stroking his face.  I never wanted to let go of him.  I suddenly began to get very sleepy and drifted in and out.  Scott and I decided that he should take Kevin out to meet his brothers and grandparents since I should be following soon.

The doctor continued to work on me for a while and then I heard, "How am I seeing the catheter?"  I had received a bladder injury sometime during the c-section.  Another doctor was called in to help with the repair and my heart dropped.  I wanted to go out and be with my baby but instead I was now in for a lengthy bladder repair.  I was frantic to get out of the OR and kept asking the doctors if they were almost done.  Each time they would reply, "Just a little while longer."  Every once in a while my epidural would start to fade and I would begin to feel a little of what they were doing.  I would let them know and they would top up the epidural again.  I alternated between bouts of dropping off to sleep and asking if they were almost finished.

After what seemed like forever they were finally done.  I was cleaned up and the sheet that had blocked the doctors from my sight was lowered.  I looked up at a clock on the wall and saw that the time read 2:58.  Kevin had been born nearly 3 hours ago.  It was too late.  I knew he was gone.

I was wheeled to a recovery room where Scott and Kevin were waiting on me.  I whispered, "He's gone?"  Scott shook his head yes.  There, in the tiny hospital bassinet, was my baby.  I asked Scott to bring him to me.  I was sad that I hadn't been with him when he passed away but knew that he had been in good hands with his daddy.  I felt an odd sense of peace that his struggling was now over.  All he had known in his life was love.

I asked Scott to fill me in on what I had missed.  He had brought him back for my parents and older sons to meet him.  Kevin passed away shortly after my sons left the room.  He had lived for a total of 40 minutes.  Scott had bathed him and had his picture taken in the outfits I had brought along,  He had been careful to do everything with Kevin that he felt I would have done.  I am forever grateful that Scott was able to be there for Kevin when I wasn't.

I was allowed to keep Kevin with me for as long as I wanted.  I sent Scott home to finally get some sleep. I kept Kevin with me for all of that night.  I held him in my arms and took in every tiny feature. I couldn't believe how perfect he looked and how much hair he had.  More than my 4 other kids combined!  He looked so perfect that it was hard to believe he had so many issues.

I kept Kevin in the room with me all of the next day.  Scott and my parents came in and everyone was able to get pictures with him and hold him for one last time.  It was nearing time for the day shift nurses to go home when I decided it was time to let him go.  We asked our favorite nurse, Rebecca, to be the one to take him away.  Letting him go will forever be one of the saddest moments of my life.

Wednesday, April 6, 2016

Kevin's Birth Part 1 (Kevin's Story Part 13)

On the morning of induction Scott and I were up bright and early.  We had been instructed to call the hospital that morning so they could let us know what time to come in.  Thankfully labor and delivery wasn't busy and they told us to come on in as soon as we were ready.

We had a babysitter on the way to stay with the twins and the big boys were going to wait at the hospital with mom and dad.   The twins had never been left overnight without one of us and I was worried how they would react.  I will never forget walking to the car that day with both Drew and Layla crying because we were leaving them behind.  I could see Drew crying at the window as we drove away.  I wanted to do the same.  I knew that when we came back our lives would be forever changed.

I really don't remember much about the drive to the hospital that day.  I do remember thinking how strange the drive felt.  I knew that when we returned from the hospital our baby would be gone.  Once again my mind wasn't quite capable of comprehending the enormity of the situation.  I tried my hardest to focus on meeting our baby.  I couldn't let my mind wander too far beyond that.

As I entered the hospital that day everything felt so unreal.  Surely the couple walking through the hospital wasn't us.  It felt like a nightmare that I would soon wake up from.

Before we knew it we had made it up to labor and delivery and I was checking in.  Mickey Mouse Clubhouse was playing on the tv in the waiting room. I wondered how the twins were doing and if they had finally calmed down.  Shortly afterwards a nurse called my name and we were led down the hall to my room.  What had previously felt like a dream suddenly became reality.  I was handed a gown to change into and had to choke back a sob.  This was really happening.  I looked across the room at little bed that was waiting for Kevin and imagined what it would be like to meet him.  

The nurse reappeared and my IV was set up for induction.  The next hour consisted of what seemed like person after person coming in and having me sign various forms.  Finally, at about 10 am the pitocin was started.  I had been induced with my oldest son Anton and labor had gone quickly.  I fully expected to be meeting Kevin sometime that night. Mom, dad, and my oldest sons arrived at the hospital and we settled in to wait.

A few hours went by and I was making little progress.  The pitocin was increased and before long I was beginning to be in pain.  Labor wasn't progressing like I had expected and I decided to go ahead and get an epidural.  My hope was to get a little sleep before Kevin arrived.  I didn't want to be so exhausted by the time he arrived that I couldn't enjoy my time with him.  

I was given pitocin throughout the night.  I had expected labor to go quickly and felt terrible that my parents and two older kids were stuck sleeping in the hospital.  I began to get very frustrated when things didn't move along as I'd hoped.

Finally, at around 4 am I had dilated enough that it looked like things were about to move quickly.  It appeared we would be meeting Kevin within the next couple of hours.  Scott called in the photographer from Now I Lay Me Down to Sleep so she could be there to record Kevin's birth and any time we had with him afterwards.  I was ready to meet my baby.

Before I knew it I felt ready to push.  I pushed and pushed with little to show for it.  Kevin didn't seem to be moving down and it was decided that we would take a break and try again in a bit.  I was propped up into a sitting position in the bed in hope that the gravity and contractions would move Kevin down farther.  

After a while I tried pushing again and still got nowhere.  Kevin didn't seem to want to budge.  I was exhausted and frustrated.  Once again I was put in various positions that may help labor to progress. Once again we waited.  It was now late morning and the everyone, including the photographer, had been waiting for hours.

A little while later it was time to try again.  My pitocin had been increased even more and I was feeling an irresistible urge to push.  The doctor felt that forceps might be needed to aid with the delivery so everything was set up and extra people were brought in to assist.  From the beginning I was completely against the idea of forceps.  I was determined to deliver Kevin on my own.  Every time forceps were brought up I refused.  I could tell that the epidural was making it difficult to feel if I was pushing correctly so I stopped topping it off.  I began to tell that I was pushing correctly but still wasn't making any progress.  I continued to push to the point of total exhaustion.  I knew I was going to have to give in and agree to the forceps.  I couldn't do it anymore.  I had nothing left.  I knew that the more time I spent in labor was more stress put on the baby,  Enough was enough.

The doctors began to place the forceps and immediately I regretted it.  It was by far the worst pain I had ever felt in my life.  I felt like I was being ripped in half and began screaming uncontrollably for them to stop.  Time stood still and I continued to scream.  I was horrified at my own screaming but at the same time unable to stop. The pain was beyond belief.  They finally got the forceps in place and told me it was time to push.  "One big push and he'll be here".  

During the next contraction they told me to push.  I was so overtaken by the pain that I was barely able to do anything.  They pulled but I wasn't able to push enough to get anywhere.  By this point I was scared for both myself and my baby.  I was in the most pain I had ever been in.  I could only imagine what this was doing to my fragile baby.  I didn't know how he could survive it.  With the next push I was so driven by fear for him that I gave it everything I had.  I knew I had to get him out and I had to get him out now.  I pushed with all my might and the doctor pulled with the forceps.  Still Kevin did not budge.  

I had failed.  I would not be able to deliver Kevin vaginally.  He just wasn't going to fit.  The doctor decided it was time for a c-section.  I had now been in labor for over 24 hours and had given it all I had but it hadn't been enough.  Kevin would have to be born by c-section and I wouldn't be able to hold him properly after birth.  What I had feared all through pregnancy had come true.

They were prepping me to go back to surgery and I asked Scott to please have someone check Kevin's heartbeat.  I was scared he hadn't made it through the trauma of me trying to deliver him.  I was mentally preparing myself to deliver a stillborn.  It was the most agonizing moment of my life up to that point.  

The nurse came over to check his heartbeat and there it was, strong as ever!  So far nothing had gone as planned but my baby was still alive.  I was going to meet him after all.

To be continued.....

Saturday, April 2, 2016

Our Final Days Together (Kevin's Story, Part 12)

36 weeks to the day with baby Kevin

My very last doctors appointment was scheduled for March 21, 2016.  On that day I was exactly 36 weeks along.  I had been counting down the days for a month now, knowing that this appointment would bring about both our meeting and the end of baby Kevin's life.

The days leading up to my final appointment were a mixture of excitement and of fear.  I was excited to finally meet my baby as any mother would be.  I was also fearful of what was to follow.  At this point I was completely miserable.  Due to the excess amniotic fluid I could barely eat and sleeping seemed just as impossible.  The moment I would lie down the acid reflux was out of control. I spent many nights propped on pillows hoping to get a few ours of sleep.  Most of these sleepless hours were spent enjoying every little movement Kevin made.  As exhausted as I was I hated to go to sleep and miss even a moment with him.

I tried to prepare myself mentally for what was about to happen.  I didn't know the exact day I was to be induced but I did know the week.  I remember looking at the calendar and thinking, "By this time next week Kevin will have come and gone."  Many days leading up to Kevin's birth were peaceful as I soaked up every moment I could.    On others I felt close to having a mental break.  How does one anticipate and prepare for both the birth and death of their child to take place in the same day?  It was nearly too much for my mind to handle.

A couple nights before the appointment Scott and I brought out Kevin's hospital bag.  We had different outfits for him to be photographed in that had special meaning to us.  First was his super hero sleeper.  It was the first outfit we picked out together for Kevin.  We had found it after his initial diagnosis of congenital diaphragmatic hernia.  He had been given a 50 percent chance of survival.  When we came across the super hero sleeper with a cape we knew Kevin had to have it.  In our minds he would fight this and one day we would bring him home.  We couldn't imagine a better coming home outfit for our little fighter.  Although things had changed he was still our little fighter.  He had defied all odds to allow me to carry him for 36 weeks.

The first toy we bought for Kevin was a stuffed elephant.  From then on everything with elephants was associated with him.  When we found out about his fatal diagnosis I began to look for an elephant outfit for him to be buried in.  To others it may seem morbid that I was arranging all of this before his death.  In my mind I knew that in his short life there would only be a handful of things that I could choose for him.  I wanted these things to be perfect.  I finally found an elephant sleeper with matching hat.  I ordered it in 3 different sizes since we had no idea when Kevin may make his arrival.  My mom made Kevin a burial gown from the same fabric as her wedding dress so in the end the sleeper would not be used for that purpose.  Instead it was the outfit he would wear in the hospital after his birth.

Next up were two blue blankets knitted by Scott's mom.  One we would be wrapped around him after his birth and would be ours to keep in his memory.  The other identical blanket would be draped over his tiny casket.

Last but not least were a tiny little cloth diaper with elephants on it and a pair of blue angel wings.  All of these things were sadly and lovingly packed into his hospital bag to await his arrival.  We were as ready as we were ever going to be.

The day of the appointment finally arrived and I remember walking through the hospital that day feeling a sense of despair that this was actually happening and there was nothing we could do to stop it.  I was also hopeful that my doctor would get me scheduled for induction as quickly as possible.  Now that the inevitable was here part of me just wanted it over with.  I was ready to meet my baby.  It felt like the right time.

We met with the doctor and went over our birth plan one last time.  My main goal was to be able to have a VBAC so that I could be alert and able to hold and be with Kevin in the final moments of his life.  We wanted no medical intervention that would prolong his life or his suffering.  We would do what we could to keep him as comfortable as possible in his final moments but wanted him to pass peacefully in his own time.  In this aspect our plans never changed.

I remember discussing all of this with the doctor with tears streaming from my eyes.  Life was so unfair.  I couldn't believe Scott and I were having this conversation about our child.  The world seemed like such a cruel place.

We walked out of the doctors office that day with an induction scheduled for the following day.  My parents were arriving that evening and would be present for his birth.  I was thankful that everything had fallen into place.  We had made it to 36 weeks which no one had ever expected.  Kevin was looking strong and the odds seemed to be in our favor for a live birth.  We had been able to time it for my parents to be here.  We wouldn't have to go through these moments alone.  We were ready.  As ready as parents can ever be.

The night before induction was oddly peaceful.  We talked with my parents a bit and Scott and I lay in bed afterward feeling Kevin move and thinking about what it would be like to finally hold him.  In that moment I didn't feel fear.  I fell asleep dreaming of what it would feel like to finally hold my baby in my arms and full of hope that soon I would get to look into his eyes.

Monday, March 7, 2016

Baby Kevin visits the White House. (Kevin's Story, Part 11)

As we get closer to Kevin's arrival I am finding it hard to update the blog.  My mind is a constant swirl of emotions that I am finding difficult to put into words.  In just a little over two weeks time I will be going to the hospital for an induction.  By the time Easter gets here I will have met, held, and said my final goodbyes to my baby boy.  Throughout the day it will randomly hit me how close things are getting.  I'll feel a surge of excitement just like I have with all my other babies. Unfortunately that excitement is always followed by a sense of dread.  I know the time is coming whether I like it or not. There is absolutely nothing I can do to change that.  My mind knows all of this but my heart isn't ready.  I know it never will be.

Yesterday was one of those days that I just couldn't shake the funk I was in.  At around 10:45 I told Scott that we had to get out and do something.  I knew I needed to stay busy and not give into the negative feelings.  Our idea to go for a drive somehow snowballed into taking a 3 hour trip, one way, to go see the White House.  By 11:15 we had the kids all loaded into the car and were on our way.

I realized that the trip probably wasn't the brightest idea.   I know that between Kevin's issues and the extra amniotic fluid I could possibly go into labor at any time.  I also knew that this would probably be my one and only chance to go on a family trip with baby Kevin.   It may not be the trip I would have envisioned but it would be the only one we would get.

Thankfully the little ones did awesome and we had minimal complaining during the drive.  It turned out to be a pretty awesome day for all of us, even if I did have some moments I didn't feel like I could have walked another step!  I am grateful that Scott had the idea and even more grateful that we took the time to enjoy the little moments we have with baby Kevin.  If there is one thing I have learned through this process it's to enjoy the here and now.  You have to make every moment count.

Baby Kevin at the White House.  34 weeks.  

Sunday, February 28, 2016

The love we know.

Scott and I have been reading a lot about families who receive a fatal diagnosis for their babies.  According to statistics between 80 and 95 percent of parents choose to terminate their pregnancies.   This makes me so incredibly sad. 

I have never once held back how I was feeling or how hard it is to live day to day knowing our baby is going to die.  It is excruciatingly hard.  It is raw and painful.  Sometimes it feels like the weight of it is almost too much to bear.  But for all those moments we also have the ones of complete love, joy, and happiness.

There have been many, many times that baby Kevin has brought us joy.  I don't know how many times Scott and I have settled in for the night to binge watch our favorite tv shows, only to be distracted and amused to laughter over the crazy dance baby Kevin is performing for us. 

When we see Kevin on ultrasound we are reminded how wonderful life is, however brief.  We watch him kick and punch and yawn and make grumpy faces that remind us of his big brother.  We see how content and beautiful he is and we have no regrets.  We don't see his diagnosis, we only see our beautiful baby who we will love and protect with all of our being just the same as we would his brothers and sister.  Our baby is so much more than the sadness and heartache we will endure.  He is love and light, our little ray of sunshine. We may only get him for a short time and, while we will certainly grieve his loss for the rest of our lives, we will never doubt that he was worth every moment.  

I don't judge anyone who has made a different choice than us.  We know that our baby Kevin is happy and strong as long as I am carrying him.  We don't have to worry that he is enduring discomfort or pain. I understand that the choice of whether or not to carry a fatally ill baby is never taken lightly.  Not everyone faces the same situation.  All I can say for sure is that carrying Kevin for as long as possible is the right decision for us.  I can't imagine missing out on all these precious moments with him.  I could not imagine cutting his beautiful little life short.  It is all worth it.

"Imagine a love so strong
that saying hello and goodbye
in the same day
was worth the sorrow"
-Author unknown

This is the love we know.

Friday, February 26, 2016

If love could save him....

The last couple of days have felt so strange.  Knowing when Kevin will be arriving is making everything seem even more intense than usual.  By this time next month he will most likely have come and gone.  I am not sure how to process that.  Sometimes I feel like I am living in a nightmare I can't escape.

The extra amniotic fluid is beginning to get uncomfortable and it's becoming increasingly difficult to sleep and move around to care for the twins.  I complain to Scott and then immediately feel bad for it.  What is my discomfort compared to what my baby is about to face?  I should be grateful for every day of this pregnancy, not complaining about it.  Most of the time I don't know what to feel.

I am having conflicted feelings about Kevin's birth.  I can't wait to hold him in my arms and spend as many moments with him as possible.  I would be lying if I didn't admit that I am also scared half to death.  Will he survive birth?  Will I get to hear him cry?  Will his tiny lungs be so immature that he will visibly struggle for air?  I am so afraid of seeing him suffer that the thought makes me almost physically ill.

 I've had my hospital bag ready for quite some time, along with a bag of baby outfits and photo props for Kevin.  Today I began putting together a small bag for the funeral home.   Inside I tucked the little blue blanket knitted by one grandma and the gown made by the other.  The little pewter urn that will contain his ashes should be arriving today.  Made to resemble a child's block, it will soon be put in the bag with all the rest.

The twins and I went shopping this morning and, as usual, I couldn't keep my eyes from the racks of little tiny baby things.  I hurried on past them and into the toddler section to distract myself.  I immediately came across the adorable little Easter suits.  I found one with a shirt in the perfect shade of blue and grabbed it.  Drew is the first one to have an outfit for his little brother's funeral.

I got to the checkout and the cashier began ringing up my things.  Normally I am happy for a friendly one but not so much today.  My head was already spinning from my morning when she started up a conversation about my pregnancy.  She wanted to know what I am having and when I am due.  She congratulated me and commented on how much work I am going to have on my hands with the new baby and toddler twins.   As with every other time this has happened, I smiled and went along with the conversation.  I don't feel like relaying the entire story to a random person in public and even if I did I don't want to bring them down.  Normally these conversations don't bother me.  Sometimes it's nice to have someone ask me questions about Kevin without knowing they are feeling sorry for me or are afraid of saying the wrong thing.  Today I am just too raw.

I don't want to make the wrong impression here,   I am happy to carry baby Kevin and extraordinarily grateful for every miraculous moment I get with him.  At the same time it hurts beyond measure that I will not get to keep him and that he is only mine for just a little while.  I wish I could change things but I can't.  I can't help but think of the saying, "If love could have saved you, you would have lived forever."  Oh what truth there is to that.