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.

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.

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.....

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.

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.  

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.

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.

Kevin's 32 week update (Kevin's story, part 10)

Yesterday I had my 32 week appointment with the doctor.  First we did an ultrasound and, while I did have a moderate amount of extra amniotic fluid, the doctor didn't seem to think it was worrisome.

My next appointment is on March 21.   On that day we will be scheduling my induction for one day that week.  I will be between 36 and 37 weeks along.  Much farther than I ever expected to make it.  As long as Kevin holds off until then it looks like my parents should be able to be here.  It means the world to me to have someone else here to witness his birth and to get to meet him.

In spite of my two prior c-sections my doctor is allowing me the opportunity to try for a vaginal delivery this time around.  I get extremely ill after c-sections and am barely able to hold or even see my babies afterward.  If we are given even mere moments with Kevin I want to be alert to enjoy them.  I am hoping and praying that my body with cooperate and all me to give birth to him naturally. While I would prefer to let Kevin arrive in his own time we know that babies with Pallister Killian Syndrome tend to be larger than average babies.  Kevin is already estimated to be at 5 lbs 7 oz.  We don't want to wait too long and run the risk of me not being able to deliver him naturally due to his size.  The longer we wait the chance of stillbirth also increases.  I can barely let my mind go there.  The one thing that has got me through all of this is the possibility of a live birth and getting to meet Kevin even briefly.  It is the one tiny thread that has kept me hanging on.

The week before Easter....that is how much longer I have with my baby boy.  I know it makes it difficult for my parents to plan their trip but I am beyond grateful that I wasn't given a date.  I am not sure I could handle knowing the exact date that my son will be born and the date that my son will die. Knowing the week is bad enough.  

I haven't discussed it with Scott yet but I don't think I want to tell the kids when Kevin will be arriving.  At least not until closer to the day my parents get here.  There is really no need for them to have it constantly on their minds too.

I had such a hard time going to sleep last night.  My mind kept going back and forth from the joy of meeting Kevin to the heartache of having to leave him behind.  My mind can't grasp how it will ever be able to handle something like that.  I know it will.  Unfortunately many have come before me and many will come after.

For the most part I have reached a point of being able to look at the positives of this pregnancy.  I enjoy every movement, every hiccup, every ultrasound photo, much more than I am sure I did in any of my other pregnancies.  I am super attuned to every move this time around.  I am excited to finally get to meet this beautiful baby boy but also incredibly sad that I don't get to keep him.

Kevin's 32 Week Ultrasound

Yesterday we took our two oldest boys, Anton and Xander to see Kevin on 3d ultrasound. Scott and I have both been very careful not to push anything on the boys but we want them to have as much involvement in Kevin's brief life as they are comfortable with.  I want them to know they had a little brother and to have as many memories of him as possible.  I think one of my biggest fears throughout this whole thing is that, because Kevin's life will be so brief, he won't seem real to anyone.  We are a military family who live miles from home and that means most of our friends and family, if any, will never see Kevin in person.  I understand that the topics of miscarriage and infant death make people uncomfortable but I refuse to act as if Kevin didn't exist.  I want everyone to know that he is as real and as loved as any of our other children.

                                Anton and Xander on the way to see their baby brother on ultrasound.

Overall I think they both had a good experience.  They seemed to like that fact that they could watch what he was doing in 4d.  I know the reality of it was lingering in the back of all our minds but seeing Kevin in action put a smile on all of our faces.  

We have had a hard time figuring out how to deal with our kids regarding Kevin's life and death.  In the end all we can do is be honest with them.  Obviously our 2 year old twins aren't able to grasp much at this point but we have tried to be as honest and open with our older children as possible.  We answer any questions they have as best we can and let them know that they can talk to us about him at any time.   


We have given both of our older boys the option of meeting and holding Kevin after his birth. That conversation will forever go down as one of the most difficult ones I have ever had with my kids.  Xander, our 11 year old, told us that he wants to be there to meet and hold Kevin no matter what happens.  Anton, who is nearly 16, is a little less comfortable with the situation. He doesn't think he wants to be there if Kevin is stillborn.  And honestly that's okay.   Everyone handles and processes these situations differently.  I can't begin to imagine what I would have done at the age of 16 and I thank God it's not something I ever had to think about.

Thank you all so much.

Both Scott and I want to thank each and every one of you who have helped us out during this time. We have had countless people, many who we do not even know, reach out to us.  We want to thank everyone who has kept us in their thoughts and prayers, those who have shared our blog and GoFundMe page, made donations toward Kevin's expenses, brought us meals, babysat our children when I had appointments, and those who have reached out to us in any way.

A special thanks goes out to my mom, Lori, who took the time to sew Kevin's burial gown from the same fabric that was used in her wedding gown and to both of my parents for taking care of his burial plot.

I also want to thank Scott's mom Cheryl for knitting the blanket Kevin will have with him at the hospital and after, and also an extra for us to have as a keepsake.

I want to thank my sister Amy for starting up the GoFundMe page. The donations will help us to give Kevin the sendoff he deserves and help with the travel expenses of a burial back home.

A special thanks goes out to Jennifer Mattson who made baby Kevin the only cake he will ever have.  It meant a lot to me that he was recognized and that our family was able to have our own little "baby shower" for him.

A big thank you also goes out to all of you "anonymous" donors out there and to anyone I may have inadvertently left out.  We have been shown time and time again that, even though there are times we may feel alone, there are people out there who do care.  We are grateful for each and every one of you.

Where we are now. (Kevin's Story, Part 9)

Life following Kevin's diagnosis has been difficult.  We've had to face things no parent ever wants to think about. Shortly afterwards we had a follow up appointment with a neonatologist to discuss how we wanted Kevin's birth to go. We chose that Kevin's delivery should take place at the larger hospital were I am currently being seen instead of our local one. I feel comfortable with the doctors there and know they have much more experience dealing with situations similar to ours.   We both agreed to only palliative care.  Should Kevin be born alive our only concern is keeping him comfortable.  We don't want to artificially prolong his life or his discomfort in any way.  While I would love to have more time with him I know that it wouldn't be right to force it.  We want him to go naturally as he is meant to.

Since we had no idea how long I would be able to carry Kevin we began thinking about funeral arrangements.  As hard as it was to think about at the time I knew it would only be worse later on. We discussed it and decided he would be buried near my home town in the same cemetary as my grandparents.  Thankfully my parents were able to take care of obtaining a plot so we could worry about what needed to be done on our end.  Since we are a military family and hundreds of miles from home we decided to meet with a local funeral home to find out what we would need to do to get Kevin back home.  As I type this everything sounds so cold and nonchalant but these were some of the most painful decisions of our lives.

The day we pulled up to the funeral home was one of the worst days of my life.  I could barely bring myself to get out of the car.  My feet felt like lead.  I am not sure how long it took me to finally get out of the car.  I remember standing at the door as Scott rang the bell and feeling the urge to run.  I wanted to run and never stop.  At the same time I knew this wasn't something I could run from.  My only choice was to face it head on.

I walked into the funeral home that day around 26 weeks pregnant.  I could feel my little boy kicking and wiggling inside me and yet there I was, preparing to discuss his death and burial.  I was focusing on one breath at a time and hoping against hope that I would not be sick.  The whole thing felt unreal and I couldn't get out of there fast enough.  I felt like I was trapped in a nightmare.

The days since have been a challenge.  I only see the doctor once a month now.  There is no need for much monitoring since we know Kevin can't survive.  Every night I go to bed and wonder if Kevin's little heart will still be beating when I wake up in the morning.  I don't sleep much anymore and it makes the days long and hard to bear.

My mother in law has gone back home.  We asked her here when there was still hope that medical intervention could save Kevin's life.  Now that we know we won't need someone to help with the twins while Kevin recovers in NICU there is no need to disrupt another life.  I know she would have stayed as long as we wanted but it wouldn't be fair to keep her here to be mired in sadness along with the rest of us.

We have tried to keep life as normal as possible for the kids.  Some days we do okay at normal and other days not so much.  Some days we can laugh and play with the kids and other days we can only feel sadness and anger at our situation.  Most days I can hold the feelings at bay but then night comes again. As my thoughts have time to wander from the days tasks reality always comes crashing back.

Day by day my baby grows larger inside me and, today, at 31 weeks,  I wish I could be putting the finishing touches on his room just like I did for his sister and brothers.  I wish I was choosing his coming home outfit instead of burial clothes.  It can be very difficult not to dwell on the unfairness of life.

At the same time I know that I have been blessed to have been chosen to carry this baby boy inside me.  I am doing all that I can to help my children understand that they have a little brother who, even thought he won't live, is an important part of our lives.  I want them to know that he is just as special and just as loved as they are.  I want them to understand that it's okay to be happy that he lives and sad that he won't be with us for long.  It's a hard road to travel but we are trying to maneuver it the best we can.

Pallister-Killian Syndrom is very rare.  To date there have been less than 300 diagnosed cases worldwide.  Of the pregnancies that weren't terminated (which seems to be about half) the average time of delivery is 30 weeks.  We are now at 31 weeks.  Each day that we get from here on out is a blessing. All we can do now is wait.  We wait to say hello and we wait to say goodbye.

My New Reality

There are some days in your life that, no matter how hard you try to forget, will be forever seared into your memory.  Today is one of them.  After weeks of avoidance Scott and I finally decided to return Kevin's crib to Amazon.  We got the his diagnosis right before we had planned to set it up.  We never even got the chance to open the box.  While it feels awful to send it back now we know it will only be more difficult later on.  If God chooses to grant us a miracle we will be more than happy to buy a new one.  Unfortunately we know that isn't likely to be our reality.

Scott made the arrangements to have it shipped back. He came home for a few minutes this morning to sit the box out front. He wanted to spare me from having to deal with it.  I thought I could pretend it wasn't out there.  I thought I would be okay.  I was hoping they would pull up and take it away and I would be none the wiser.  I got the twins down for a nap and brought the laptop downstairs and sat it at the desk near the dining room window.  I opened it up and was getting ready to type up the next installment of Kevin's story when UPS pulled up.  The moment I saw the truck I lost it.    I wanted to throw myself on the floor and kick and scream and cry just like my 2 year old son does. The thought of them driving off with my baby's bed was unbearable.  As the truck pulled away my first instinct was to chase after it.  If only that would change anything.

 If there is anything I have learned in this past year it's that life isn't fair.  I often wonder what I have done wrong to deserve the things that have happened.  What could I have possibly done so wrong that deserves this sort of punishment?  On my better days I know this isn't my fault.  On my worst I feel like it must be.  Some days my mind can't begin to process the sheer horror of it.

Every single day it feels like I am wading through muck, just trying to take one step at a time to get through the day.  How long can a person live like that?  I don't know but I guess I am going to find out.  If it wasn't for my other children I doubt I would even be able to get out of bed in the morning. All I can do is pray to God that he give me the strength to make it through just one more day.  And then one more.  And then another after that.  What other choice do I have?

Today I just can't.

When I started this blog about baby Kevin I knew that no matter how difficult it was I had to be real.  And let me tell you, today it feels real.  I had been doing relatively okay this past week or so.  I've been making meals, playing with the kids, and doing all those normal things people take for granted.  Somehow I was getting through the days.  Then last night as I was trying to fall asleep the reality of Kevin's diagnosis hit me all over again.  I cried through the night and I haven't been able to stop for a lot of today.  Sometimes it feels so heavy that I don't know if I can withstand it.  As I get bigger and the weeks go by I am constantly reminded that my days with baby Kevin are numbered.  I am trying my hardest to remember how blessed I am with whatever time I am granted with him.  I am working on being grateful for every little kick, every ultrasound photo, every moment I get to share with him in this life.  But I am not going to lie...it's hard!

For all my "good" days there are just as many horrible ones.  There are days that I want to kick and scream and yell about the unfairness of it all.  And yet I know that Kevin was put here for some reason.  It can't be an accident that he was placed here with me.  I can't believe that it was a random roll of the dice that led us here.  I don't yet know what that reason is and maybe I never will.  I only know that there has to be some purpose to this all.  If I didn't believe that I wouldn't be able to survive it.

I will get back to Kevin's story soon but for today, I just can't.  Today is one of those days that I am trying my hardest just to get through one hour, one minute, one second, at a time.

When I couldn't sleep last night I came across the song "I Will Carry You" by Selah.  I had just finished a book of the same name by Angie Smith not realizing that it was written by the wife of one of the artists who performs the song.  It was written about their daughter Audrey who also received a fatal diagnosis in the womb.  I am so grateful that they chose to share their story and this song.  I finally feel like there is someone out there who understands what we are going through.  I highly recommend the book to anyone going through anything similar.

The song has been on my mind all day and I decided to create a slideshow for baby Kevin using it.

A New Mindset (Kevin's Story, Part 8)

It had been just over a week since we had received the worst news of our lives.  I was 25 weeks pregnant and we had recently announced to our friends and family not only our baby's name, but also the fact that he wasn't expected to survive.  We had chosen the name Kevin Landry at the beginning of the pregnancy.  I had known that if we had a boy I would name him Kevin after my dad.  Now the name seemed to have more meaning than ever.

It was the day of the 3d/4d ultrasound that Scott had scheduled back in November as a birthday gift to me.   It had been meant to be a family event.  All 6 of us were going to go and we would let the boys learn if we were having a boy or girl.  I had been talking it up to them for 2 months and we were all excited.

With Kevin's diagnosis, everything changed.  Scott and I were just as excited as ever to see our baby but we were worried about taking the kids.  We knew that with the Pallister-Killian Syndrome diagnosis it was possible for him to have any of an array of physical deformities.  They were still trying to process the reality of what was happening to their baby brother and I felt that it was too soon to possibly expose them to anything like that.  Scott and I decided to go alone and find out what we were dealing with.  We could always show the boys the photos and dvd at a later date when we'd had time to explain anything we had seen.

Scott had called ahead to let them know our baby's issues so we wouldn't have to explain things when we got there.  If there were any outward physical defects we didn't want the person doing the ultrasound to be caught off guard.  

Getting to see Kevin that day was one of the most special moments of my life.  There was absolutely nothing that made him look like he was different from any other baby.  He looked perfect. If we hadn't already received his diagnosis we would never have believed that anything was wrong.  It was hard to watch this perfect, active little guy on the screen and believe that he wasn't going to make it.  It was surreal. The ultrasound tech was awesome and spent extra time with us.  She took her time to get the best shots and gave us photos that we will treasure for a lifetime.  She also threw in a stuffed elephant that plays a recording of his heartbeat.  I knew all of these things would be a comfort in the days to come.  I was and am so grateful for modern 4d technology that allowed us to see our baby in life.

It was like a switch inside me flipped that day.  My focus up until this day had been on how awful and unfair this was.  I had never for a second considered not carrying Kevin for as long as I could but the thought had been equal parts horrifying and scary.  How could I carry this baby only to turn around and give him up?  Seeing Kevin's face changed everything.  For some reason I was chosen to carry this wonderful, special, little boy inside me.  I didn't know why or for how long but I knew that no matter how short his little life was I would do my best to make sure that he was loved and remembered.   That I could give him.   

Scott and I went out to dinner afterward just like we had planned 2 months before when the appointment was first scheduled.  Seeing our little boy so beautiful and full of life had lifted our spirits.  For the first time in ages we were able to taste our food and even smile.  We knew that our little boy was worth all the difficult days that lie ahead. Every moment with him was precious.  We knew we could do this.  We could do this for Kevin.

A Dad's Perspective (Kevin's Story Part 7)

This post is my perspective of what happened the day we found out about

Kevin's terminal diagnosis. 

We woke up on New Years eve. It had been a crazy couple of weeks. We had found out that Kevin suffered from CDH and then that the first test results were negative for the most common genetic disorders. We had already started planning for the months we would be spending at the Children's hospital of Philadelphia.

The first step was getting my mom to Virginia help us care for our other four children. We knew it was going to take everything we had to get Kevin through this, and needed help to just to make sure the other kids were ok. The weekend before New Years consisted of me driving to Indiana to pickup my mom.

It had been an exhausting few weeks but when we woke up on New Years Erica and I both had a feeling everything would turn out ok. We knew it was not going to be an easy journey, but we knew in the end our family would be complete, and we would bring Kevin home. We decided to have a normal day and take Anton to go buy a game at Gamestop.

We got in the car joking with Anton and me and Erica smiled and we were ready to deal with all life had to throw at us. Or so we thought. We had barely gotten on the main road from our housing area when I heard the phone ringing through the speakers in the van. I did not recognize the number so hit accept call and then I heard it. "This is Debbie the genetic counselor from the Naval Hospital." Since we had not told the kids about the birth defect I quickly took the phone call off of speaker phone.

The first thing she asked was if I was driving and when I told her I was she immediately asked me to pull over. I remember Erica  whispering "oh no", and leaning towards me to listen to the conversation.

I honestly don't remember much from the conversation, but remember Anton's confused look as Erica sobbed when the words "not compatible with life" came through the phone. He could not hear the conversation but it was obvious that something bad was happening. When I got off the phone all I wanted to do was hold Erica and comfort her, but we both knew that the Taco Bell parking lot in front of our 15 year old son was not the place to come to grips with this reality.

We got home and I told Anton to go in first and go upstairs, and Erica and I took a few deep breaths and started into the house hoping to hold it together long enough to get upstairs so my mom and Anton did not see us break down completely. We went into the door and instantly my mom's face changed. It must have been obvious that something was wrong. We started up the stairs and Erica dropped, unable to take the news. I helped her up and led her to the bedroom as she cried out, "I can't do this" and "How are we going to make it.?"

I got her into the room and laid her down in bed and held her as she sobbed. It broke my heart to watch my wife lay there as her world crashed down around her. The hope we had just a few minutes ago was gone and had been replaced by the crushing reality that our baby was not going to make it. As Erica calmed down I knew I had to go talk to Anton. I was not sure how he would react as he is autistic and does not always have normal emotional reactions.

I went in his room and he was staring quietly at the wall. There was no game controller in his hand and the screen to his TV was black. I knew he was upset and sat down and asked him if he understood what just happened. He answered simply with that he heard the lady said genetic counselor and that he figured something was wrong with the baby. I explained everything that had happened the last two weeks, and that the call we got was that the problems baby Kevin were even worse than originally thought. He most likely would not live. I could tell he was struggling to find the words to explain how he felt. I felt so bad for him, because he has a special bond with my 2 year old twins and he looked forward to having  the same bond with Kevin. I asked him to try and tell me how he was feeling. He told me he did not know how to explain it. I decided to leave him alone to think and went back to check on Erica.

Going back into the room I sat beside Erica and explained the conversation that I had just had with Anton. She said she wanted to take him to get his game and that she did not want him to go to sleep with the image of her on the stairs crying being the last he saw of her that day. I went into the bath room and started a hot bath for her and told her to go in there and relax as best she could and when she was finished we would take Anton to get his game.

We managed to get back in the van and drive to the store. While we are there Anton is looking at games and every time Erica talked he looked at her like he was expecting her to break down. He picked out his game.  We then took him to pick out his new shoes. It was oddly calming to do something normal.

When Xander came home I had him go to the garage with me.  I sat him down and explained everything to him. I explained the CDH diagnosis and then went over the genetic disorder. He reacted the opposite as I expected. I figured he would be purely emotional and upset. Yet the first thing he asked was "Why cant they fix him?"  I explained the genetic disorder prevented him from getting the treatment he would need to survive the CDH. He took a deep breath and then started talking about a video game. I asked him if he understood the news I had just told him. He said he did and I figured he was going to need to process it in his own time.

I went to sleep that night wondering how I was going to guide my family through this storm. I knew that in the end we would make it through, but how much of the "us" that was there on December 17th would remain when we come out the other side of this.

Our World Comes Crashing Down (Kevin's Story, Part 7)

Today I sit down to write Kevin's story with an even heavier heart than usual.  Part of me can't bear to type these words but an even bigger part of me knows that it must be done.  The world needs to know that Kevin lived and his story needs to be told.

It was New Year's Eve and my 11 year old son Xander was spending the day with friends.  My mother in law agreed to watch the little ones so we could get some one on one time with our oldest son Anton.  He wanted to go to GameStop and get a new game with some of his Christmas money.  We also wanted to take him to get some new shoes before school started back up.  With everything we had going on we knew that we hadn't been spending time with our kids like we should.  This was an opportunity to begin turning that around.

The three of us loaded into the car and headed toward GameStop.  We had been driving for just a few minutes when Scott's phone rang through the van's hands free system.  Scott answered and we heard the caller announce that she was the genetic counselor and that the baby's results were back.  Scott quickly disconnected the hands free but it was too late to keep Anton from hearing who it was.

Even with hands free turned off I could hear snippets of their conversation.  She asked if he was driving. When he replied yes she asked him to pull over.  My heart sank.  It was in the parking lot of a drive thru restaurant that we got the news.  I couldn't hear everything but I managed to catch the words chromosomal abnormality, Pallister-Killian Mosaic Syndrome, and incompatible with life.  I pieced together enough to know that if by some chance our baby did survive he would be intellectually impaired.  Chances were he would never speak or walk.  He may not be able to hear. He could suffer from seizures or have skeletal abnormalities.  The list went on.  Anton was in the seat behind Scott and I was trying my hardest not to let my emotions get the best of me.  He couldn't find out now.  Not like this!  I couldn't do it.  I cried right there in the car.  I think I cried harder than I ever had in my life.  

After what felt like hours Scott finally got off the phone.  I told him we needed to go home.  The 5 minute drive from that parking lot to our house was the longest drive of my entire life.  At some point during the drive Anton dropped his change.  I can still hear those coins falling onto the van floor. Apart from my crying it was the only sound.

We pulled up in front of the house and I somehow managed to get inside.  Scott's mom was sitting in the living room and I know she knew it was bad from the expressions on our faces.  I tried to run up the stairs but collapsed a few steps up.  I remember wailing, "I can't do this!" and Scott helping me upstairs and into bed.  I lay there for hours trying to absorb it all, trying to process the fact that we were never bringing this baby home.  I felt awful about what Anton had just witnessed.  No one should ever get news that way.  Especially not a 15 year old boy regarding his baby brother.  Scott went to go explain things to him.  I couldn't bear to do it.

Scott came back into the room to let me know he had talked to Anton.  While he was gone I had decided that I wasn't going to let Anton's day end like this.  I got into the bath and got myself ready.  We were taking Anton out to get his new game come hell or high water.  To this day I don't know where I drew the strength to get up and do that.  I just knew that I still had other children I had to take care of.  I don't think my mind was ready to completely process it yet.  I was still in shock.

Scott, Anton, and I got back into the car and set off once again.  Anton got his new game and his new shoes and then we returned home to live the hell that was now our lives.  Xander arrived home and Scott had to break the news to him that his baby brother would not live.  I don't know how he was able to do it but I am grateful he was able to talk to our boys when I couldn't.  I couldn't have made it through the following days and weeks without him.