We're in Holland???

The first day of a babies life is so exciting.  Meeting siblings, family, mom and dad gushing with joy!  We had all that but also so many tears, fighting, and worrying!  The bright spot of my day was that Kierstin was coming to meet her brother!  I dreamed of this moment....my two babies meeting for the first time.  I had imagined her coming in my room with a big smile, I would gush with joy as she climbed onto my bed and reached to hold her little brother.

She was on her way to Buffalo and the hospital NICU was on restriction due to RSV.  They had a rule that no visitors under 16 could go in.  I had no idea of this rule until that day.  I had this Dr, who decided she needed to follow me around pretty much all day.  She was a Resident with absolutely no bedside manner.  She told me of this rule.  I said "My daughter will meet her brother before he goes into major surgery, and that is not up for debate"  So the hospital social worker came to see me (I love how the social workers feel they need to talk down to you, at least this one) and told me again of this policy, I stood my ground and said you can test my daughter if you wish, you may take the baby into another room, but they will meet and I am not allowing you to take him into surgery until this happens.  Finally they agreed that if she wore a mask and a gown she could enter the NICU to meet him.  Ok, now I am not sure why they felt the need to stress me over this while I was already under tremendous stress when later I find out they make exceptions like this from time to time.  Yeah that is just cruel!

I cried when they first met, not at all like I pictured it or how it should have been, but Kierstin masked up and got to see him!  She sweetly touched his leg and talked to him, I think Preston was comforted by that voice that he had been hearing oh so much while he was in my belly.  It was only for 5 minutes since that is all they would allow, but my children met that day and I will remember it always.

The next part of the day is a blur....I remember parts of it.  Saying good bye and praying over our boy outside the OR.  I was crying and I remember him whacking me in the eye with his IV....like he was saying, "knock it out mom, I am going to be fine!"  I prayed that God would send angels around him to watch over him in that room and I think that he did.  I remember Eric and I going back up to my hospital room to wait for him.  Kierstin was there.  At one point that annoying resident came in and I asked if they had done the blood test to determine if he did in fact had downs syndrome.  She decided to tell me then oh yeah the results came in from the amnio and he does.  That was an hour and a half into his 3 hour surgery....I know, nice that she could not wait to share that information.  I remember her then attempting for me not to have the blood test done having the geneticists come into talk to me (while he was still in surgery) to talk about Downs Syndrome. 5 people apparently are needed for this...I still demanded the blood test and then kicked out 3 of them.

Finally word came that surgery went well and we could go see him.  He was sedated but looked comfortable, I could not hold him the rest of the day or the next, but I sat by his bed crying, praying, thinking.  That was the worst thinking....thinking about the life I had dreamed of for him and how I would need to give up that dream.  I did not study Downs Syndrome, I was convinced my baby would be fine.  I did not know what all that meant.  I knew a few people with DS.  They were sweet and so happy, but this was my baby.  How would I protect him from this cruel world?  How would I explain this to Kierstin?  How do I explain it to him?

I think this poem explains it all...

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Preston's Birth Day

So truth is I was excited and yet dreading this day....does that make sense?  So excited to meet our little boy, kiss him, hold him, smell him, see what he looks like and just bask in all his wonderfulness!  On the other hand I knew that once he was out there was a lot of uncertainty and scariness.  He was in his nice little cocoon...me, and was all safe there.  In the outside world he could not survive without a surgery and I knew they would whisk him away from me.

So the 11:00 am scheduled induction did not happen, I loved where I delivered Kierstin, it was small and nice.  Buffalo is big and busy!  Due to a lack of rooms I did not get in until about 1:30!  We just sat in the waiting room...waiting!  Uncomfortable, anxious, and just ready to see him.  We finally got the room and I had tested positive for Group B Strep (not an STD....I know it sounds like one, but really common).  So I had to have an antibiotic and then wait 4 hours before the next dose and then they would be able to break my water.  So by the time they gave me the first dose it was like 3 pm.  I got some potosin to start things up, but not any real pain just some mild cramping.

So we just hung out in the room, my mom had flown in from Florida to be there so she made it in time to wait with us.  We texted updates, made some calls, talked, and that was about it.  Then I got my next dose at about 7 and they were able to break my water finally.  Let me tell you when they said I had a lot of fluid they were right!  Eric would not even stand next to me he was so grossed out!  He stood on the other side of the curtain and said it sounded like he was standing by a stream.  It was quite gross!

Things started to get more intense, not too bad just I could feel it more.  They all advised that if I wanted an epidural now was the time, because after the water breaks things really speed up, I took their advice and good thing.  Dr. E checked me and I was at 7 cm I think she talked to me a bit and then was going to go get a bite to eat.  I told her I felt a lot of pressure and she checked again and boom...10 cm and head was in launch mode!

I was whisked off to the OR for a natural birth. I will spare all the details, but we will just say embarrassing!  2 doctors and one nurse for me.  Then about 20 people walk in for Preston.  Just sitting there waiting around talking waiting for me to push him out.  It was very uncomfortable to say the least!  

He came out so easy, no pain at all.  Dr. E even said ok just give me a small push or he is going to fly across the room.  I remember that final push at 8:56 pm and then a small cry and he was out and he was beautiful!  Lots of dark hair, his little eyes struggling to open in the bright OR lights.  A little 6 lb 6oz peanut.  I got to hold him right away while Eric cut the cord.  They suctioned him and I remember him sounding like there was a lot of fluid in his lungs.  He was perfect!  So tiny and sweet.  I fell even more in love with him.....all this waiting and worrying and here he was my baby, my little angel!

They quickly took him over to the 20 waiting people and gave him a quick examination.  In what felt like forever they brought him over and Eric got to hold him for about a minute then I got to hold him again and kiss him and just marvel at how perfect he looked.  I did not see a baby with downs syndrome.  I just saw a perfect little boy, my little boy!  He was so tiny, but so perfectly formed.  He was our miracle!  The nurse kept trying to take him back, but I was not ready to let go so I held on tight.  Finally she pried him out of my arms and they whisked him off to the NICU.  I would not see him again for 3 emotional agonizing hours!

So I went to the recovery area, Eric and my mom got to go visit him and would bring me pictures or send me some (Thankful for modern technology).  I had to wait for the epidural to wear off before I could go anywhere.  I found out he weighted 6 lbs 6 oz and was 19 inches long.  2 oz of fluid was suctioned out of him.  Dr's would come in and out, surgeons telling me all kinds of things I don't even remember.  All I thought about was how perfect he was and I did not care what label they put on him....he was my precious baby boy and nothing would ever change that!  I was in love!

I finally did get to see him 3 hours later.  In a wheel chair.  I got to see that precious boy with a big tube down his throat, 2 iv's in his hands, and numerous monitors hooked to him.  It broke my heart!  What did they do to my little angel.  It just looked so sad.  This was not how it was suppose to go.  We should be in a nice quiet room cuddling together, no wires or tubes.  We should be nursing and bonding.  Not like this!

I did get to hold him, but started to feel like I was going to faint so I had to give him up.....I was so mad at myself, but when I almost fell out of the wheelchair on the way back I guess I made the right decision. I would not see him until the next morning and then he would go into surgery.

Last Few Weeks of Craziness!

Ok, so I will not deliver with the Doctor I wanted at the hospital I wanted and I am 34 weeks pregnant. I need to get a new doctor in Buffalo STAT!  Buffalo by the way is 2 hours away from where I live.  Our wonderful friend, Barb, who proves to be so helpful during our stay in Buffalo helps me find a wonderful group of Doctors, especially Dr. E who will deliver Preston.  They are in demand so I call and talk to Dr. E's husband, who is also an OB Gyn for high risk pregnancies, I explain my situation and he said he will discuss with the other 2 doctors and get back to me.  They agree to take me on and deliver at Children's hospital where they typically do not deliver.  So I begin my weekly visits there.

So during that time I swell.....my feet are soooo large, I really should post a picture, but I will spare you all!  I am in constant pain, I go to half days at work because sitting for that long is so painful that I am almost in tears.  I seriously can do nothing without being in pain....my stomach is so large and I have an abnormal amount of amniotic fluid....everyone keeps commenting on the large amount of fluid so apparently it was something!  I am also still a little worried, but trying to be as positive as I can.

I have a dream one night, it is strange, but I saw Jesus.  It felt different, It smelled different, I could not move.  I kept asking "Jesus, will my baby be ok?"  My eyes close shut and I still feel him but can not see him.  I keep asking, "Will my baby be ok?"  I can not open my eyes as hard as I try.  I ask again and finally get my eyes open.....I am awake and in my dark room.  I still feel his presence.  He never did answer me, but he visited me in that dream.  It is going to be ok.  It really is!

So at 37 weeks I go to a doctors appointment and they tell me I am dilating and because of all the fluid I have they want to take the baby early.  The are afraid that the umbilical cord is going to come out before that babies head and that is NOT a good thing.  So in order to determine if we can do this they want to do another amnio right then to determine if his lungs are developed and have me come back the next day (Friday).  I am not ready to have a baby yet!  I ask what if I start having contractions again, they don't think that will happen, but if it does they will not stop it at this stage.  I talk them into waiting until Monday to do the amnio and then if the lungs are developed they will deliver that day!  They later switch that to Tuesday due to a crowed hospital, but that is why he came just 2 days shy of 38 weeks.

I went to work on Monday (crazy I know).  Then we went to Buffalo on Tuesday and prepared to have ourselves a healthy baby boy!  Excited and nervous we went in for the amnio....hardly hurt a bit, these doctors did not feel the need to go in through my belly button and I so appreciated that.  They told me to go to the hospital at 11 am and they would be ready for me!  So we just kind of relaxed a little and went to Starbucks.  Then off to the hospital where our roller coaster ride would begin!

Worst Day of My Life!

March 1, 2012.....I prayed and prayed.  I know all is going to be ok, not sure why I know this, but I just feel it.  We get into the ultra sound room with the tech and see our sweet little Preston on the screen moving like crazy!  She comments on how active he is.  So she gets strangely quiet and Eric starts to ask questions all of which she says we need to talk to the Doctor.  It just gets weird, she asks "so Dr. W saw you 2 weeks ago right?"  We say yes.  "She scanned you herself?"  yes "She did not see anything except the duodenal atresia?"  yes.  It just was strange and you knew something was wrong, but she kept saying you need to talk to the Dr, who apparently can not come see us at that moment, so I start sobbing and Eric starts sobbing.  The tech says "I am so sorry, you seem like such nice people.  I wish I could tell you something but you have to wait for Dr. S."

So finally Dr. S comes in (who is super loud) just to tell us that she wants us to go get something to eat and then she will have time to talk to us.  Yeah I feel like eating, I do eat a little because it is for Preston not me.  So finally after over an hour she meets with us and says "Club Foot, Sandal Toe, something with the heart chambers, something with the brain, Trisomy 18 perhaps (which is lethal).  But she wants to scan me again to be sure.  First thing she does is call in another doctor.  She rules out Club Foot, she is iffy about the brain thing, and still sees everything else.  She wants to get me into the Pediatric Cardiologist right away and also is strongly advising an amnio test so we can be prepared.  Oh and says you don't really have a lot of options at this point (I kind of want to punch her).

Against my better judgement we agree to the amnio.  A long needle inserted into my belly button....I think I am still getting dried up blood out of there.  They want to monitor me after that and I start having pretty strong contractions pretty close together so down to maternity I go to get some medication to stop the contractions.  I get an IV and am told I need to take 3 pills with an hour between each one.  If that does not work I need to stay the night.  The whole time we are hysterical.  Nothing in life is worse then thinking something bad is going to happen to your child.  It is a feeling I wish for no one.  Finally the contractions stop and we are able to go over to the awesome Cardio doctor to have him take a look at Preston's heart.  He is truly a wonderful Doctor, so comforting and stayed late just to see us.  He took a look and did not see anything abnormal in the heart for the stage of pregnancy.  It was just like a typical 34 week old babies heart.  Ok, big weight lifted for that portion at least.

So we get home and cry some more, I am still feeling some contractions and am mentally and physically drained.  I stay home from work to relax as instructed.  My regular OB doctor calls me to see how I am and I just say "Confused"  he says he is going to get the results from the "Fish Test" which is a pulmonary test that you get from the amniotic fluid and the official results will probably not be out until after the baby is born since I am so far along at this point.  It is Friday so he said he will call me Monday or Tuesday.  I think it is Wednesday before I finally hear from his office and he wants Eric and I to come in....so not a good sign.  He shares with us that the Fish Test shows that the baby does have Downs Syndrome.  We ask how accurate that is and he says around 90%.  In that office I felt a calm come over me...I can't explain it, I just knew it was going to be ok.  I still worried and cried, but I had faith.  To be honest I believed God would heal him and he would be fine.  That was not his plan, but that is ok!  I look at his sweet face and I can't imagine him any other way.  I would not want him any other way.  I like that he is going to have a totally different outlook on life than anyone else.  I love that he is different and is going to amaze people with what he is able to accomplish.  I would not change him for anything!

What Happened...

So for those of you who always wondered here is how it all went down (no pun intended-you have to have some sense of humor).  I was about 18 weeks pregnant and had already refused all the prenatal testing that screens for Downs Syndrome and others.  We went in to see if Kierstin was having a brother or a sister and after all that excitement my doctor told me they found a "bright spot" on his heart called a echogenic cardiac focus.  She said she only saw one and it was probably nothing, but wanted me to see a specialist because they are linked to babies with Downs Syndrome.  She kept saying it was probably nothing, but wanted to be cautious.  

So after a planned trip to Florida to see family, we went to a specialist in Buffalo, NY.  First the ultra sound tech looked over him.  I have to add that Preston has always been a mover, I felt him around 13 weeks and he never stopped!  I thought for sure it was not him at first, but it got stronger and stronger and pretty soon there was no denying it was our boy! So anyhow, due to all the moving around it was hard for her to get an accurate measurement.  The measurements she finally got were off and we got all worried.  Then the Dr. came in and re-measured every inch of him and after about 3 hours she said to her all looked fine, giving the disclaimer that you can never be 100% with an ultra sound and I should get an amnio test to be sure and then I could decide what I wanted to do.  No thanks!   I know what I am going to do and finding out is not going to change it so why worry!

So then I went for the dreaded glucose test to see if I had gestational diabetes.  I failed!  I went for another 3 hour test, failed again :(  So put on a strict diet and the doctor decides to monitor me weekly with ultrasounds.  So first one I go in for shows something "funny" with the stomach.  He makes us come into his office and tells us we need to go back to the specialist.  

So we go, and she confirms that the baby has what they call "double bubble" or Duodenal Atresia.  Which, as easy as I can describe it is a closure or block in the duodenum and food would not be able to pass through unless he had a surgery to repair.  This occurs in 1 out of every 10,000 births.   However about 40% of babies with downs syndrome have this condition.  Still she says measurements look fine and she double checks the films from last time and said there was no sign of this.  So she explains we need to meet with a Pediatric Surgeon and it will mean I need to deliver in Buffalo and he will need a surgery soon after birth.  

We were upset!  We were thinking he would be in the hospital for 2 weeks and I just remember thinking how horrible that would be and how I did not think I could do that.  Little did I know it would turn into 6 long weeks!!!!  So we met with the surgeon, I am going to call him Dr. I Am Soooo Good.  ha ha, he was a trip!  

Then we had to see yet another specialist at the Children's hospital on March 1st....this is the worst day of mine and Eric's entire life......Cliff Hanger!

Meet Preston!

My blogging career was short lived!  So much has happened since I last posted and that is really the reason I want to start this again!

We had a baby boy!  A wonderful, handsome, glorious baby boy!  His name is Preston and he was lucky!  He was born with an extra 21st chromosome.  I want to elaborate on why we are so happy with how beautiful God has made him just in case someone stumbles upon this blog who is pregnant with a baby who has tested positive for Downs Syndrome.

We found out it was a possibility late, I cried, I worried, I was so sad, I was mad, I hoped for the best, but I decided that no matter what he will be loved!  I have always been pro life and knew all along that whatever baby God blessed me with I would love unconditionally.  That is why I never got the prenatal testing the doctors like to shove down your throat.  I always said that, but to be honest I never though my baby would be anything less than "perfect".  We already had a totally healthy 4 year old daughter.  We wanted to add a little brother or sister to the mix.

We had a plan and we thought it was a great plan....little did we know God had an even better plan for our lives!  One that would change who we are and how we viewed life.  He is only 6 months old as I write this.  I know there are challenges I have yet to face.  Battles I will need to fight.  I don't care!  I am in love with a boy named Preston and I will move heaven and earth for him.  I was chosen.  I was handpicked by God himself to be his Mommy.  I view this as an honor.  All children are blessings, but I received an extra special one.

I am going to commit myself to write more of our story.  The story over the last 6 months and the story that has yet to be told.  I might not know how it will go just yet, but I know that it is going to be a beautiful story about a boy who changed the world!

3 Years Has Never Gone By So Fast!

I never knew how fast time could go by, I never knew someone could love my singing so much, I never knew I was so funny, I never knew how many questions could be asked about something so simple, I never knew that a walk around the block could take a half an hour, I never knew I could love someone so much... but now I do!  My baby girl turns three today! 

Happy Birthday Baby!