I was due with my twins Kayla and Megan on September 11, 2000.  However due to some severe edema and a decrease in blood flow through Megan's umbilical cord the decision was made to do a Cesarean Section early at 34wks 5 days.  My doctor felt both girls were large enough and developed enough to be safely delivered early.  Kayla was born first at 12:41pm followed by Megan at 12:42.  Kayla was 5 pounds 6 ounces and 19 inches long.  Megan was 4 pounds 6 ounces and 17 1/4 inches long.  Both were beautiful but Kayla looked like a fragile porcelain doll, so fair and with really long elegant fingers.  Both girls did  really well and we all went home on August 8, 2000.

Kayla and Megan 4 days

That first day was when I first suspected something wrong.  Kayla's soft spot on the top of her head felt like it was bulging.  I am a labor and delivery nurse so not unusual that I would be checking out my girls.  I called the doctor but because the baby was acting normal she passed it off as my being an over anxious mom.  However over the course of the next two days it became obvious that her head was also growing.  

Kayla 4 days

Kayla was one week old when she was admitted to Pediatrics for evaluation.  Our nightmare was just beginning.  Her CAT Scan showed a very large tumor.  In fact the resident said it was "quite impressive".  We did not really understand that at the time.  They called in a world known Neurosurgeon to come evaluate her.  We had to wait two long tortuous days to get the awful news.  Our baby's tumor comprised just about her entire brain cavity.  An extremely huge tumor which shocked everyone who looked at it, even us and we really did not know what we were looking at but when you saw it you just knew it was really bad.  He assumed it was cancerous due to it's extremely rapid growth.  To attempt to remove it would kill her.  There was absolutely nothing he could do.  We were devastated, how in this day and age could there just be nothing they can do, we were in such a state of shock. The tears just would not stop for the next several days.  He told us just to take her home and spend what little time we had left.  Which would most likely happen in just a few days, possibly a couple of weeks but it would be very fast.

In the Hospital Kayla was barely eating.  John and I felt that we probably had only days before she passed.  We spent the next few days in a frenzy trying to get a family portrait of the four of us.  Paul a friend of John's was the one who took the photo that shows the four of us on our home page.  During this time we had many people praying for us.  Our church plus many other churches added Kayla to their prayer chain.  When we got home she started to eat.  After a couple of weeks she was eating as much as Megan.  Except for her continued head growth she appeared as any healthy newborn.  The growth of her head made it very difficult to care for her.  You had to be really careful as her head probably comprised 2/3 of her weight toward the end.  She never complained much though until the last few days.  We cherished that extra time with her that we were not initially expecting.  During that time I felt strongly that God had decided to heal her but that it just was not physically showing yet.  God gave us 6 wks of just holding, cuddling, loving, and taking as many pictures as possible after she was diagnosed.  It was during her 7th week though that she stopped eating completely.  But I still  kept holding out hope that God would not really take her.  

A couple of days before she died was actually when God let me know through a poem He inspired me to write, that He was not going to heal her.  

It’s Just So Hard To Say Goodbye  

  You’re beginning is a miracle

too many losses as we tried.

Then they told us there were twins

thanking Jesus as we cried.

We worried all the time for you

that a miscarriage might take your life’s.

That before we could say hello to you

we might have to say goodbye.

Then came a very special day

when we finally heard your cries.

Twin girls who are so beautiful

our hearts burst out with pride.

At one week we learned the awful news

that Kayla soon would die.

They’re asking us to take you home

that soon you’ll say goodbye.

We look to God and shake our heads

and sadly ask Him why?

He says He has a better place

way above the sky.

My ways are hard to understand

but for me, would you please try.

I’ll give you extra time with her

before you say goodbye.

God’s plan is always best you see

Someday, we will  know why.

Someday I’ll take you up to her

that day when it’s your time.

With arms outstretched, He says it’s time

with me she’ll be just fine.

I will cherish and watch over her

now it’s time to say goodbye.

I know God wants the best for her

we simply can’t deny.

But gosh, does it have to hurt so much

without her by my side.

God I lift her up to be with you

we trust you as we sigh.

Kayla our sweet precious baby

it’s just so hard to say goodbye.  

                                               Marilyn Rauvola

Tuesday September 26th was when Kayla stopped eating.  The following Friday she turned 8 wks.  We were actually surprised at how long she held on despite not taking in any food.  All I could do was moisten her mouth but even with that she would get upset.   I wanted nothing more then to hold her and rock her but toward the end any movement of her head caused her pain.  Her last 3 days were awful.  I kept praying to God to take her.  I could not even hold my baby without causing her a lot of discomfort.  For two days she lay in the bassinet and all we could do was change her diaper and turn her every two hours.  We were giving her morphine and benedryl around the clock.  But still she would gasp out in pain.  It was the most heartbreaking time I have ever experienced.  To watch your baby suffer and feel so totally unable to comfort or help, is a feeling I hope I never experience again or anyone else does for that matter.  On Sunday October 1, she passed away in my arms.  John, my sister Debbie, and my oldest daughter Brianna were at her side as well.  God did give me one day where my holding her did not seem to cause her anymore pain and that was the day she died.  We were very blessed to  have gotten that little extra time to really be able to love her and say good-by.  It has been so very difficult since she passed away.  We however are comforted in knowing that she is no longer suffering and she is with Jesus, what better caretaker could she possibly have.  Also she must have really been special for God to want her with Him.  She blessed so many lives while she was here.  People all over the world were praying for her. Our baby, our precious angel has forever changed our lives.  

This poem I wrote the day I could no longer hold her because of causing her too much pain.  It just broke my heart.

Kayla, my sweet precious baby

no one will ever know

the grief I feel inside

 and just what you mean to me

Your life cut so short

oh, not this I plead

to God above

on bended knees

The agony I feel inside

when you cry out to me

it just brakes my heart in two

does this really have to be

 I long to show my love to you

to comfort and meet your needs

the helplessness I feel inside

oh, the pain this causes me

I want to hold you in my arms

and comfort you next to me

but touching you, just brings you tears

oh, relieve her pain God please

Kayla, I am so sorry

to see you in such pain

I pray for the peace of God’s glory

to soon shine upon thee

Just recently we received Kayla's autopsy report.  We were surprised to find it was not a malignant tumor but a Teratoma.  This type of tumor can be benign or malignant.  The Pathologist however said it was different then most Teratoma's that are benign however, in that it was growing very rapidly which is why the Neurosurgeon thought it was cancerous.  This has been a very frustrating finding for us.  We had hoped that if we could not have our baby that maybe she could have helped someone else's by receiving one of her organs.  Because it was supposedly cancerous they told us that was not an option.  Now we wonder!  One of the drugs I took to keep from having a miscarriage may have had an effect on the tumors growth.  Probably something we will never really know but that I will always feel a bit of guilt towards.  I also believe however that we would not have her sister Megan had I not taken the drug so it is a very bittersweet dilemma.  

This is Kayla about one week before she passed away.  Her head circumference had grown from 13 1/2 inches at birth to over 22 inches.  She was still very beautiful to us.

Kayla was a beautiful baby and we just have been so devastated by this loss.  Recently I started grief counseling and would recommend that for anyone who has lost a child.  Your emotions can be so jumbled up and holding it in is the worst thing you can do.  I find that family and friends seem to squirm when I start talking about her to them.  The best advice I can say to those who know someone who has lost a child.  Talk to them about the child, it does not cause them more pain but helps.  Because one of the worst fears many grieving parents will have, is that their precious little one will be forgotten.  

Jo is a woman who helped us with our funeral arrangements.  She told us to take our time in designing the marker for Kayla's grave site.  I am so glad we did because it ended up being so beautiful.  I would recommend to anyone who looses someone precious to them.  Take your time, don't rush something so important.  Below is her marker.  The inscription is hard to read on this picture, this is what it says.

• God Said:

• I have come to take this special child

• but for you I created two

• Little Kayla I am taking now. 

• Little Megan I'll leave for you.

• Kayla

• We trust you to the Fathers love and to His tender care

• Held in His everlasting arms oh were so glad you're there 

• With breaking hearts and open hands, we'll never be the same

• It hurts so much to let you go but we're so glad you came.

•  

• To well loved to ever be forgotten

• You're mom, dad, and twin sister Megan

• Big brothers Jason and Kevin

• Big sister Brianna

Kayla and Megan 2 wks.  

Me and Kayla (2 weeks)

I carried you in my womb

then I carried you in my arms

and now, until it no longer beats

I'll carry you in my heart

           author unknown

Thanks for reading our story and sharing a part of our precious baby's life.

E-mail me if you have ever lost a child, as only those who can relate will ever really be able to comfort.

Four months have gone by and oh how we still miss you Kayla.

Kayla it’s been 4 months

since you’ve been gone

the pain hasn’t lessened

it’s just as strong

You were our baby

we had hopes and dreams

of you together

 with Daddy, Megan, and me

You were our twins

at least that’s how we thought it would be

always together

for many years we believed

Born with a brain tumor

it’s just too hard to believe

so swiftly you were taken

God not this, we plead

We know you know best

the Bible is clear

but how do we put to rest

all the sorrow and tears

The bible says

in all things be glad

God, how is that possible

when we’re just so angry and mad

She is daily in our thoughts

forever in our memory

our life’s will never be the same

we just miss her so much

We love and miss you Kayla

Mom