Kaylee's Story

Kaylee's story begins 3 years before she was born.  Many of you already know the story before her story, but for those who don't I will give a quick recap here and then you can feel free to visit her brother's websites to get all the details...

In May of 1998 our first child, our son Devon was born.  In September of 1998 we found out he had a terminal illness called Spinal Muscular Atrophy (SMA) Type 1.  During March of 1999 we found out we were expecting another child.  In June of 1999 Devon died in my arms.  Two months later, in August of 1999 we found out that we were carrying another son, and that he too had SMA, and by the end of the month Devon's little brother Sidney followed him to heaven.  Six months later, in January of 2000, we conceived our third child.  I was afraid, but mostly excited.  I felt so sure that this time things would be fine, that the baby would be healthy and strong.  I wrote in my journal that I was begging God to let this baby live, be healthy, not have SMA, cancer, or anything else horrible that exists out there.  I wanted to worry about potty training and not breathing machines, mac & cheese as a nutrition problem instead of feeding tubes and starving to death.  I said I didn't think my spirit could take it if we were faced with death over life again.  I figured out how to tell everyone the good news once I found out test results, I set up the testing time.  And a week before the test was scheduled to happen, at 9 weeks gestation, I started spotting.  I knew.  Right then I knew, because I've never spotted with the other two.  I laid on that couch, cried, and didn't move for two days.  I knew that wouldn't stop anything but I had to do it anyway because I never wanted to look back and wonder "what if I didn't try".  Two days later it was over, and I went to the doctor who gave me my shot of Rhogam and told me what an "unfortunate circumstance" it was that we had to lose this baby too.  I thought that was the understatement of the year, personally.  One on-line friend whom I had secretly told I was expecting, another SMA Mom, sent me an e-mail that said "Better Luck Next Time" like I bombed a pot roast instead of lost my third child.  We told our parents in a simple "Laura had a miscarriage last week" sort of way, but I pretty much didn't tell anybody else, not for a long time afterwards.  Dealing with it on my own seemed much easier than dealing with comments from other people whom I knew could not say the "right" things-since there was nothing to say.

Within a year's time we had lost three children.  It was too much, it was more than anyone should have to bear, any one loss was plenty terrible enough by itself, which you will see if you go read the boys stories, but to go through so much suffering and loss in such a short period of time was just overwhelming.  It left me so drained, so exhausted emotionally and mentally to say nothing of physically that I didn't have anything left.  The last line of my journal entry the day I talked about the miscarriage was "It feels as though we will never have a surviving family on this earth, I have lost my hope.  I am tired and sad and just...tired.  I am tired of the deaths of innocent babies-especially MINE!"  

We lost Baby Stants March 20, 2000.  So when April came and went without the normal cycle, I thought it was simply my body continuing to adjust to the miscarriage.  I started exercising, started dieting and started trying to lose the 50 pounds I'd put on in the last 3 years.  The middle of May I was having a hard time keeping up with my exercise routine any more, I was getting short-winded and exhausted halfway through.  I started crying easily, and I caught a miserable cold.  Now THAT made me suspicious.  I *always* catch a cold when I'm pregnant, and I realized I was late.  I assumed my body was still out of whack from the miscarriage, but just in case I bought a 2-pack of pregnancy tests.  We were at my mom's house again, just like with Sidney.  I took the test, and it came up negative.  But I was suspicious by then, and I knew my body pregnant by now.  So I waited until the next night, and got out the second test, which I stared at while it worked.  I saw a line in the window and my heart felt a shock, until it occurred to me that was the "Control" window.  Duh.  No lines in the other window.  I waited and waited, past the time limit.  Then suddenly there it was, very faint but there.  I sure enough was pregnant, somehow conceiving the month after the miscarriage.

I walked into the bedroom where Steve was, who didn't know I was even taking the test, and I showed him the test and told him it was positive.  Neither of us whooped for joy, we just laid side by side on the bed, looking up at the ceiling, wondering.  We don't have the luxury of getting a positive pregnancy test and celebrating, because we don't know if the baby will live, or die like his/her 3 siblings.  Steve and I talked about how we wished we could get the positive test and then everybody would be happy ever after.  Instead we get to wait 3-4 months to find out life or death.  We can't celebrate our baby until we know they won't die in our arms.  It is so tragic to me that such good news has to be met with such fear.

But this pregnancy was different.  I felt it.  I just felt that the baby was okay.  I couldn't help but be excited.  I immediately looked up on the internet Due Date calendars and Chinese birth charts for sex and dates and came up with a baby girl due Jan. 24, 2001.  We already had a name for a girl, Kaylee JoAnn Stants.  Kay is my middle name, Lee is my birth father's middle name, Jo is my mother's middle name and Ann is Steve's mom's name.  So the day after I found out I was pregnant, I wrote in my journal that supposedly Kaylee JoAnn Stants is due Jan. 24, 2001.  And since you're looking at the website, you know that Kaylee JoAnn Stants arrived Jan. 23, 2001.  :)

But we didn't know all would be okay yet, and two days after the first test I took another pregnancy test because the first was so faint.  The second was just as faint, so I called my doctor.  Because of the recent miscarriage, they agreed the levels should be high enough to make a dark line on the test by now and that I needed to come in for a blood test twice the next week to determine if the levels are going up-or not.  So now I had another test to do, another life or death test to wait for results on.  Miscarriage, or healthy pregnancy?  I became SO angry, I was absolutely furious at the hint of another problem, I just wanted to start screaming at somebody.

Finally, a week later, I had been waiting all day long for "the phone call" on the blood results, and I gave in and called them.  And in a Hardees parking lot in Paoli, Indiana, I learned that the levels had tripled in two days, and the baby was going to be just fine.  I went absolutely weak in the knees, and I thought to myself, "one call down, one to go."

On Memorial Day Steve and I drove out to the cemetery to leave flowers for Devon & Sidney, and we told them they were going to be big brothers.  I cried most of the way home.

At 8 1/2 weeks pregnant I wrote that time is moving quickly towards the CVS and that I'm so grateful for the fact that I hadn't been as scared as I was with Sidney.  I didn't know if it was a peace that everything would be okay or a first-time ability to put it out of my mind until I got an answer one way or the other, but either way I was surviving this much better than last time.  I loved being pregnant and would love it four-fold when I found out if the baby was okay.  My heart prayed while my mouth couldn't find the words.

The last week in June/first week in July we went on a motorcycle road trip with my Mom and Ernie.  They had no idea I was almost 10 weeks pregnant, and it was terrible keeping that secret, but the trip itself was a wonderful distraction keeping me from dwelling on the test just a week away.  I got my first bout of morning sickness on that trip-I was brushing my teeth in the bathroom while my mom was in there, and the toothpaste made me sick-I was throwing up in the sink and trying to do it silently so as not to give away the fact to my mom less than 3 feet away in a stall that I had morning sickness!  I also ended up with a severe migraine (something else I get a lot of especially the 1st trimester when pregnant!) and hoped nobody connected the dots on that one either!  We got home on Saturday, Mom & Ernie left our house Sunday, and at 5 a.m. on Monday morning Steve and I got up and drove to Indianapolis for my CVS test.  The test itself was fine, though she had a hard time getting the sample and it was a little more painful than the other time.  I had a serious case of deja vu, sitting there watching the ultrasound (the baby slept the whole time and didn't move), and it wasn't a good deja vu.  All I could think about was Sidney, and it didn't help that the doctor had suddenly become all cautious on me, telling me about contaminated samples and not knowing if they got enough material to run the test and all that crud.  Thanks for the confidence booster there lady!  The test did cause me to spot, which scared me.  I was afraid I would lose the baby because of the test-it *is* a risk of the test, though a minor one.  But after you've lost so many "minor" odds in a row, any percentage of a chance is scary.  Thankfully the spotting stopped after two days, and an ultrasound the next week showed a sleeping but just fine baby.

A week later I got the call that the chromosome study was done on the baby and that everything was fine...and that the baby is indeed a girl.  I was so thrilled to hear "girl"!

Then came the rest of the wait.  Man, what a wait that is.  I started getting antsy after 3 weeks.  I had been handling it well but I was starting to obsess.  I never went anywhere without my phone just in case I missed the call.  Every day that passed, when 5 pm came and went and I knew there wouldn't be a call that day, there was this indescribable feeling.  Any day now, any day now, nope, not today, maybe tomorrow...and tomorrow...and tomorrow.  Live or die?  A healthy daughter or another life in the balance?

Finally after 3 weeks and a day I'd had enough, and *I* called *them*, looking for news, and as I was talking to her, the report was coming in with the results!  She said immediately "I have good news for you!" I REALLY appreciated her coming right to the point like that-it took away so much of the fear.  She told me the results were negative for SMA and that the doctor in Ohio and all of them were very happy for us and that they all wanted a picture when the baby was born.  I was at the office when I got the news, and Steve was sitting there talking to some other guy and I had to wait 20 minutes to tell him.  So I e-mailed my friends while I waited to tell him the good news.  That time when I knew and nobody else did was the most precious gift in the world to me, the best secret in existence.  Finally I got to tell him, and he got the biggest grin on his face.  The next best gift-seeing that look of happiness on his face.

In August I had a 3rd ultrasound, and for the 3rd time Kaylee was sleeping, not moving.  I even drank a part of a Mountain Dew to try to make her wake up for the ultrasound so I could see her moving, but no go!  I have to admit that made me nervous, when you go through a disease that starts in the womb with lack of movement, it does NOT make you feel good when you don't see your baby moving on ultrasound!  So I ordered a Doppler Baby heartbeat monitor on-line, and I LOVED that thing.  Any time I had worries or concerns, I'd lie down on the couch and listen to the baby's heartbeat.  It was the most relaxing and wonderful thing I could do for myself...

At this point I was flying for Pizza Hut, and I enjoyed the looks I got as a pregnant woman flying around.  ;)

Around the third trimester I started getting plagued by more worries about SMA again.  I tried to ignore it, but it was there.  The thought was so bad that I couldn't even think about it for long without panicking over it.  I decided if she had SMA too after all, I would just die, that would be it for me.  She wasn't moving as much again, and it was so reminiscent of Devon in the last few weeks. I had to have a non-stress test done because of lack of movement, and I sat there in the same room with the same machine that had done it with Devon my last month with him, which he had passed by the way, and I sat there with tears running down my face at the memory and the current fear.  I got paperwork ready to have a blood test done on her cord blood when she was born, to check one more time for SMA.  I was unbelievably scared again.  Two weeks before she was born, I changed my mind.  I decided not to run the test, that I knew I would still watch her reach milestones with fear until she could hold her head high from her stomach, but that she was whole and healthy and loved no matter what.

On Jan. 22nd, I started having contractions that Monday night as Steve and I were finishing up the wallpaper in her bedroom.  All night long we worked in the room, watched TV, and I timed my contractions.  By 11:30 pm they were every 5 minutes but mild in intensity.  I thought we'd be going in that night and called and warned some people.  I finally went to bed, where they slowed down to every 8 minutes and getting more painful.  By 8 a.m. Tuesday I was pretty confident it was the real deal, it was hurting!  I woke up Steve and suggested he shower and get ready.  I did too, and called the doctor and they told me to come in at 10:15.  When we got there my doc was delivering another baby so we had to wait, but when he finally got there and checked me I was at 3 cm so he said it was real and sent me over to the hospital.  The first epidural I got didn't 'take' and after getting hit with severe back labor that felt like an electric prod in the kidney (where it hurt for months afterwards!) I got a second epidural.  Blessedly this one worked and the rest was a breeze!  At 8:08 pm that night, Tuesday January 23rd, as Steve was telling our doctor the current score of the IU/Purdue basketball final game that was on, Kaylee was born, perfect and beautiful.  Her cry sounded like a kitten, I remember that.  The first night in the hospital, I was alone with Kaylee because we had company, and I was too sore to move.  So I had her in bed with me, but I couldn't find the bed remote to shut off the lights or watch TV or anything, so I just sat up with her in my arms for hours with lights on staring at nothing but Kaylee until finally a nurse came in hours later.

The next few months were spent very happy-and secretly worried.  I kept looking at her, reassuring myself with her strong legs, arms and neck.  I kept waiting for that big milestone-when she could lift her head from her tummy, one thing Devon could never do.  I waited and waited, and never fully relaxed until she did it.  The first time she lifted her little head up from her tummy, tears burned in my eyes and I knew, in my heart, that my worries for her were over.  That I could start enjoying her without the secret doubts and fears that gnaw no matter what.  After you lose 3 children, it is very hard to believe that your 4th will be okay.  It took a long time for me to not worry that if not SMA, *something* would take her from me.

Kaylee is not a replacement for her brothers.  She is *not* a replacement, but a wonderful addition to our family.   Our lives are not 'just fine now' because we have a healthy daughter.   Our sons are gone and nothing will change that, ever.  Another child does not make the pain of losing your other children any less.  But she does bring her own special joy into our lives.  She is fiery and rambunctious, happy and smart as a whip.  She is our miracle girl.  Every milestone that she has reached is so exciting for me.  When she rolled over, when she sat up, and when she took her first steps.  Physical milestones that excite every parent, but have special meaning for a parent who watched another child slowly become paralyzed.  I would just stare at her as she kicked her feet and sat up in the grocery cart, as if SHE were the different one, not Devon.  I have never yet taken for granted her health, her strength, her spirit.

I never will.