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.