{3/21=World Down Syndrome Awareness Day}

What is 3/21?  3/21 happens on March 21st each year.  It is a day that symbolizes 3 copies of the 21 chromosome. 

Down syndrome occurs because of an abnormality characterized by an extra copy of genetic material on all or part of the 21st chromosome. Every cell in the body contains genes that are grouped along chromosomes in the cell's nucleus or center. There are normally 46 chromosomes in each cell, 23 inherited from your mother and 23 from your father. When some or all of a person's cells have an extra full or partial copy of chromosome 21, the result is Down syndrome.

The most common form of Down syndrome is known as Trisomy 21, a condition where individuals have 47 chromosomes in each cell instead of 46. This is caused by an error in cell division called nondisjunction, which leaves a sperm or egg cell with an extra copy of chromosome 21 before or at conception. Trisomy 21 accounts for 95% of Down syndrome cases, with 88% originating from nondisjunction of the mother's egg cell.

The remaining 5% of Down syndrome cases are due to conditions called mosaicism and translocation. Mosaic Down syndrome results when some cells in the body are normal while others have Trisomy 21. Robertsonian translocation occurs when part of chromosome 21 breaks off during cell division and attaches to another chromosome (usually chromosome 14). The presence of this extra part of chromosome 21 causes some Down syndrome characteristics. Although a person with a translocation may appear physically normal, he or she has a greater risk of producing a child with an extra 21st chromosome.



I took this picture of Finn on 3/21.  He is sick with a cold, but I still wanted a picture of him on his day.

Although we have only been on our journey for 9 months, this day will forever be a part of our lives.  Even though I am "aware" I am still educating myself and learning more every day.  What I do know is that this extra chromosome has made our little Finn extra cute, extra cuddly, extra needy, and extra special.  He is a pure delight to have around.

In honor of Finn and World Down Syndrome Awareness Day, I bought this necklace from my Facebook Friend whose daughter also has Down Syndrome. 

It says, perfectly imperfect.  Although Finn may appear to be imperfect, he is perfect.

{Lets Get Physical.....}

....Therapy.

Finn gets therapy for 1 hour every 2 weeks from Miss Marcie.

Working on sitting up.  Straightening the back using your hands.  Helps to get the correct posture.  Need to work on strengthening the core. 

Verbal response.  Responding verbally when spoken to.  Finn scores high in this category.

Gross motor skills.  Finn grabs toy, holds toy, and brings toy to mouth.  Right on track.

{To Tell or Not to Tell}

31 for 21 blog challenge day 24

Well, I did it.

If it's strangers, I could care less. I feel no need to explain anything. If it's someone I know, they already most likely know and are comfortable to ask me questions. If it's someone whom I see regularly, but don't associate with on a regular basis; that's where I just don't know.

I had to take Finn with me to my nutrition class last night.  It was the first time not being able to avoid people that didn't know my situation.  I was in a position where avoiding the facts was inevitable.  The first thing they said when I walked through the door was, "You have a baby!  Let's see your baby." 

"Oh he's cute."  "Look at that hair."  All were very sweet and nice. They talked to him throughout the night.  And Finn was very polite and smiled back at them.  One of them asked about his oxygen band aids, but that was it.  It was easy.  And it was nice. 

But all the while in my head I'm wandering-They know, right?  I don't need to tell them, do I?  Should I?  

Being in this situation is one of the harder things for me to have to deal with.  Do I need to explain my kid to others?  I don't explain my other kids.  You'll never hear me say, "Gavin..... Ya, he looks the way he does because he has blue eyes and super long eyelashes."

It's difficult.  But unless I break the barrier, I always wonder.  They know, right?  I don't need to tell them, do I?  Should I?  The other person will usually never say anything.  But I don't like labeling my son.  "Hi, this is Finn.  And he has Down syndrome."  Down Syndrome doesn't define who Finn is.  And it shouldn't. 

Well, I didn't say anything last night to the people I was with.  And they didn't ask or question.  Whether they knew or not, I don't know.  But I am glad that I didn't say anything.  I shouldn't have to.  It was nice.  I did wonder what they were thinking though.

BUT

I like to think that maybe they were looking past his disability and seeing Finn for who he was.  Or maybe they kept looking at him and talking to him to figure out just what it was that was wrong with him. 

I've decided that I'm not going to explain Finn to people upon meeting him for the first time.  If they want to know, they're going to have to ask.  Finn is not Down syndrome.  He is a little boy who has brown eyes that smile back at you when he smiles.  He has dark brown hair that sticks straight up in mohawk form and won't go down.  He is a very happy baby and always has a smile to offer.  He is a little boy who will talk (coo) your ear off if you'll give him the time.  He hardly ever cries and is patient.  He has a calm demeanor.  He has a spirit about him that is sweet and delicate.  He is a precious boy, and my son.

{DS Tidbit}

31 for 21 blog challenge day 18

• The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.

I found this statistic to be interesting.  I always thought that if you were older your chances of having a child with Down syndrome were significantly high.  But such is not the case.  I find it interesting because a lot of young mothers are having children with Down syndrome.  Which makes this statistic seem likely.  Because so many young mom's are having children at a young age,  the percentage of is higher because there are more young mom's having babies than older women.  By the time some women decide to have kids, they are 40 and they only have one child.  Many young women decide to start having kids in their 20's and by the time they are 35 they could easily be on their 5th plus kid, putting them at a higher risk. 

• People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.

Finn has been blessed, and for the most part is healthy.  We are so blessed to live in a time and in a place where medical technology is available to us.  I had a lady visit the other day.  She saw that Finn was on oxygen, and I mentioned to her that it's kind of a pain.  And she simply said, "Yes, it is a pain, BUT how lucky you/we are to be able to put our kids on oxygen."  She proceeded to tell me that her Doctor had returned from a trip to Haiti? and how sad it was that some of the babies just needed to be put on oxygen, but it wasn't available to them.  Many of them didn't make it through the nights.  I am lucky.  And very grateful that Finn is able to get the treatments he needs.

• Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today.

We live in a great day and age.  I couldn't ask for more but more time.  And if Finn is as sweet at the age of 60 as he is now, I'll keep him as long as I can.

{DS Tidbit}

31 for 21 blog challenge day 14

• Down syndrome is one of the leading clinical causes of cognitive delay in the world – it is not related to race, nationality, religion or socio-economic status.
 
 
• The incidence of Down syndrome in the United States is estimated to be 1 in every 700 live births.

• Of all children born in this country annually, approximately 5,000 will have Down syndrome.

• There are approximately 1/4 million families in the United States affected by Down syndrome.

• 80-95% of pregnancies with a prenatal diagnosis of Down syndrome are terminated (a meta-analysis concludes that 92% worldwide are terminated).

This last statistic blows me away.  It makes me sad.  Having a child with Down syndrome (or special needs for that matter) is not the end of the world.  If people weren't so selfish or prideful, had confidence or faith, weren't ignorant but were willing to learn, love, and expand their horizons, they would see that having a child with Down syndrome opens up a whole new world that they would have not have otherwise been capable of understanding.  It brings out emotions that you didn't even know you had.  It makes you appreciate and love life more fully.  It makes you understand that people with Down syndrome (and any child with special needs) are just people too.  Their handicap can be your greatest blessing.  Although it may be inconvenient, and it sucks that your kid isn't like your perfect neighbor's kid, and it may be hard and sad; the advantages that you will have over others (your neighbor with the perfect kid) with your ability to see people for who they are, your increased empathy, the thick skin you will grow due to other people's insensitivity, and an appreciation for the hard things that parents do and go through will be invaluable and will give you a leg up and will propel you forward one more step on the game board of life.  No, it's not easy; but it is worth it.

{The End of The Story}

31 for 21 blog challenge day 12

The bond wasn't immediate.  In fact it didn't really happen until 11 days later when we brought him home from the hospital. 

Upon seeing him, he looked a lot better than I when I first saw him when he was born.  He wasn't all red and swollen.  And his eyelid seemed to be just fine.  He looked A LOT better.  It got a little easier each time we visited him. 



Our first visit to the NICU.

We forgot the camera in our room and I told Kurt that we needed to document our first visit, so he went back to the room to get it.  It took him a while to return.  I asked him what took so long.  He said that when he got to the room the Bishop was there.  They had a nice visit.  Had we not forgotten the camera we would have missed him.  Kurt needed that visit.

Sometimes sadness would hit when I would hold him.  I wasn't sure if I was sad for him or sad for us.  It was confusing trying to sort out how I was feeling.  I do know that the way I was feeling was normal.  But it was confusing because you feel one way, but yet you know you shouldn't, but yet it really is ok to feel that way.  Confusing.

The kids weren't allowed to visit the baby while in the NICU.  One day they came up to see me.  I asked the nurse if there was anyway she could bring him to the glass doors.  Because he was oxygen, it made it hard.  BUT she went and got a portable tank, set it up, and brought him to the glass doors so the boys could see their new baby brother. 

The boys loved it.  I was so glad that they were able to see him.  We laughed because we all thought he looked like a little sumo wrestler.  The boys thought that was funny. 

Our little guy would spend a total of 11 days in the NICU due to low saturation levels in his oxygen. 

I eventually left the hospital and went home to my normal routine.  It was bizarre.  It was like I gave birth.  And that was it.  I had no product of my hard work.  Nothing changed when I came home.  I weeded in my flower bed.  I drove kids places, I went grocery shopping.  I carried on like it was nothing. 

But it wasn't nothing.  I had a baby in the hospital.  But yet it felt like I had no baby since I wasn't doing baby things.  I did travel 40 minutes (there and back) to the hospital each day to take milk and see him for an hour or two.  But there was an empty weirdness upon returning home each day babyless. 

Thankfully, 11 days later he was able to come home and join our family.

It made all the difference having him home.  It was real.  He was ours.  And he wasn't going anywhere.  The bonding began immediately.  We were all smitten. 

{DS Tidbit}

31 for 21 blog challenge day 10
What is Down syndrome?

Down syndrome is a chromosomal disorder caused by an error in cell division that results in an extra 21st chromosome.

What causes Down Syndrome?

Down syndrome occurs because of an abnormality characterized by an extra copy of genetic material on all or part of the 21st chromosome. Every cell in the body contains genes that are grouped along chromosomes in the cell's nucleus or center. There are normally 46 chromosomes in each cell, 23 inherited from your mother and 23 from your father. When some or all of a person's cells have an extra full or partial copy of chromosome 21, the result is Down syndrome.

The most common form of Down syndrome is known as Trisomy 21, a condition where individuals have 47 chromosomes in each cell instead of 46. This is caused by an error in cell division called nondisjunction, which leaves a sperm or egg cell with an extra copy of chromosome 21 before or at conception. Trisomy 21 accounts for 95% of Down syndrome cases, with 88% originating from nondisjunction of the mother's egg cell.

The remaining 5% of Down syndrome cases are due to conditions called mosaicism and translocation. Mosaic Down syndrome results when some cells in the body are normal while others have Trisomy 21. Robertsonian translocation occurs when part of chromosome 21 breaks off during cell division and attaches to another chromosome (usually chromosome 14). The presence of this extra part of chromosome 21 causes some Down syndrome characteristics. Although a person with a translocation may appear physically normal, he or she has a greater risk of producing a child with an extra 21st chromosome.

When Finn was born the first thing I questioned, was:  Did he get Down syndrome because of something I did or didn't do?  I immediately thought:  I ate like crap sometimes.  I could have eaten better.  I did too much.  I should have taken it easy.  I skipped on some of my pre-natal pills.  Sometimes I forgot.  I even had the thought that I yelled at my kids alot.  And somehow I blamed myself for the loud environment that I caused and thought it to be symptomatic.  I learned that the answer was no.  There was nothing that Kurt or I did. 

Without doing the test, there is no way to tell that your child has Down syndrome.  Even ultrasounds don't pick up on the extra chromosome.  85% of children born with Down Syndrome are diagnosed after delivery.  This extra chromosome takes it's form at the time of conception.  So before I even knew I was pregnant, Finn's DNA was set up as such that he would have Down syndrome.  There is nothing that I could have done, nor my Dr., to prevent this from happening.  This was just the way that God intended him to be. 

{And the story continues....}

31 for 21 blog challenge day 9

We didn't get much sleep. 

Around eight in the morning Kurt got up and went home to check on the boys who we'd left sleeping just 7 hours earlier. 

We agreed that while he was gone he would call his parents and I would call mine and tell them the news. 

I just laid in bed and stared at the wall. 

I finally got the gusto to call my parents.  My Dad answered the phone.  I told him that we had the baby.  He asked how everything went and if the baby was ok.  It was then that I broke down and told him.  I could tell that both he and my Mom were trying to be strong/keep it together when talking with me.  My Mom was feeling bad that she couldn't be there/come to be with us as they were serving their mission.

(Kurt's parents came to our aid as soon as they heard the news. They were such a great help and blessing as we so needed them at that time. Kurt's Mom stayed for 2 weeks and helped us with the boys, cooking meals, and cleaning. My parent's just couldn't stay away either. They hopped in the car on their P-day and made the 6 hour drive to see their grandson and to make sure we were ok. The next day they hit the road so they could be back in time for their shift at Martin's Cove.  The Ma & Pa's come for a visit.)

Moments later after talking with my parents the geneticist came in.  He was a flamboyant man.  And in his flamboyant voice he said, and I quote:

"Hi, my name is so and so.  Now you've seen your baby, right.  Me:  Yes.  No like you've really seen your baby.  Me:  Yes....???  Like close up.  You've been able to study your baby.  WTH?.....  Me:  Yes, I've seen my baby.  And Yes I know he has Down syndrome if that's what you're getting at.  Ok.  Good.  Because I didn't know if you'd seen him or if you knew he had a syndrome."

Oh.My.Gosh.  Get the frick out was all I could think.

He finally told me that yes, our son had Trisomy 21, but only after I acknowledged it. 

In hindsight-a month or so later, I have come to the conclusion that no one could/would tell us that our son had Down syndrome for legal purposes.  I gathered that his Dr. could be the only one to give the diagnosis.  And since we didn't have a pediatrician, he didn't have a Dr.  and that's why no one would tell us.

A few minutes later after he left, my real Dr. came in.  He pulled up a chair and he said, "I don't know what to say."  He apologized for not being there for the delivery.  We had a really great conversation.  One that I needed.  I appreciated his sincerity and his advice. 

He asked if I would have wished that I'd known the diagnosis before hand.  I did opt out of doing the test that would have given us the results before the delivery.  He mentioned what good would it have done?  I wasn't going to abort it.  I wouldn't have been able to do anything about it.  Why dwell on it for months.  He was right I thought and I agreed. 

In hindsight-I do wish that I would have known.  If I would have known I think I could have prepared myself waaaaay better.  For one the shock factor would have been dramatically less.  Had I known, I could deal months before the baby was born, and would have been able to focus more on our baby for who he was instead of what he had.  I also would have been more emotionally invested in a positive way. 

A few minutes after that a nurse came in and asked if I wanted to go see the baby.  No.  I didn't.

I laid in bed for a little while, and stared into nothing.  I cried some more. 

After a little while I got up and wanted to change and freshen up.  I looked in the mirror.  I looked bad.  I don't know/remember a time where I've cried so much.  My eyes were super swollen and puffy.  There was nothing I could do to make myself look better.  Not even makeup helped.  My eyes were so swollen makeup wasn't even an option to put on. 

Kurt's sisters had come to get the boys and Kurt was able to come back up to the hospital.  After a while we finally decided that we were going to go see our baby.

Kurt pushed me in a wheelchair down the hall to the NICU.  Upon entering you have to scrub in up to your elbows with soap and a scrubber.  Just like the Drs. do before they go into surgery.  The smell of the NICU will forever be stained in my memory.  It's not a smell that I particularly enjoy. 

When we got to our baby's room he was under the lights with his sunglasses on, as he was jaundice.  He was a big boy.  He was the biggest in the NICU.  Although he was 8 lbs plus, they still referred to him as a preemie since he was 2 1/2 weeks early. 

The nurse let us hold him.  He had an iv and wires everywhere.  Emotions were still high.  I held him.  He was extra "floppy" and extra "gushy" as I like to say.  A little different from my other babies.  Although different, he was mine.  He was given to me, and I was to be his Mom.  It would take a little bit of time to get to know this little guy.  One thing that I was really hoping and praying for was that I would feel a bond with him.

{Another Post Without a Title}

31 for 21 blog challenge day 7

We sat in silence and each had our moment.  We didn't speak.  Kurt sat in the chair, and I in the bed.  We sobbed.  Guilt began to set in.  We just had a baby.  People are happy when they have babies.  It's an exciting time.  Getting to see all the characteristics your new baby has inherited from you, feeling their soft newborn skin, putting your finger inside their tiny palm to see if they'll grasp it.  There's cooing and kissing, babytalking and there's a sense of pride and accomplishment.

There was none of that for us.  We were shocked, heartbroken, and detached. 

Why shouldn't we be happy.  We just had a baby.  I gave birth to him.  I know he's mine.  What's to be sad about.  He's a person too. 

Expecting one thing only to get something that was not even on our radar; being caught so off guard, having our world rocked to the core is a feeling that I can not describe in words.  The expectation and image that I had in my mind all those months of another little bald, skinny, white, big toed Hepworth boy joining are family were so off track from my now, reality.  I was grieving the loss of the perfect child I had envisioned all those months. 

The Dr. who delivered our baby returned to our room to inform us that the baby is having difficulty with his oxygen levels and so he will be in the NICU for a few days.   She asked if we had a pediatrician.  We didn't.  We asked if the baby was ok.  She said that my Dr. would be there tomorrow to speak to me as well as a geneticist.  And then she left.

At this point I was really kind of ticked off. Why won't anyone say it? Just say it. Our son has Down syndrome. No one told us he had it, no one said anything. Not even the Dr. who delivered.  Why? If someone could just tell me, I could deal and try to move on.

"The second I saw him, he was sucking on his tongue and I knew. I knew he had Down syndrome." Kurt said. He also said that when the baby was born, he heard the Dr. comment that it looked like our baby had a bit of a syndrome. 

Kurt and I knew he had down syndrome.  I didn't really know what those words entailed.  All I knew is that there was a girl in my church growing up named Vonnie Anderson, who had Down syndrome.  Visions of her popped in my head.  They weren't the best visions.

A nurse came in to move me to the recovery part of the hospital.  It was a little awkward.  We were known as the people with "the baby."  All the nurses knew.  They were extra sensitive and nice.  I really liked the one who moved me to my recovery room.  After she moved me, I was out of her jurisdiction and it was the last I saw of her.  I don't remember her name, but I can totally picture what she looks like. 

A nurse came in and asked if we wanted to go down to the NICU to see our baby.  We both looked at each other and shook our heads.....no. 

We did not want to see our baby.  What a sad thing.  I didn't feel like this baby was mine.  It couldn't be mine.  I honestly felt like I was handed someone else's baby when I held him for the first time.  That sounds so awful.  The feelings and emotions that we were feeling were so overwhelming.  It was just too much to see him at that time. 

The nurses left us alone for the rest of the night. 

Still in shock and still having been crying continuously since I first held our baby; my eyes were puffy, swollen and tender.  The area just under my eyes were sensitive and rubbed raw from continuously wiping tears away.

The sun was just coming up, and we still hadn't gone to sleep for the night yet.  Kurt offered a word of prayer before we would lie down and try to sleep.

"We can do this, right?"  I asked.  "Yes, we can.  We don't really have a choice."  He was right.  We didn't have a choice.

{A Post With No Title}

31 for 21 blog challenge day 4

The immense pain I was feeling was gone.  Just like that.  Night and day feeling.  I felt it leave my body at the exact same time that my baby came into this world.  I had survived!

The Doctor laid the baby on my chest.  Had she been "MY Doctor"  she would have known that I didn't want the baby on me.  They started to clean him off and then I heard Kurt say, "Look at all that hair."  I told the nurses to take him off me.  I didn't even look at him.  I just wanted him off of me.

As they whisked him away to clean him up and weigh him he started crying.  He had a super loud cry.  A cry that didn't sound like any of my other babies.  It was a cute cry.  I looked at Kurt, who was over checking out our new little babe and said, "Oh, that is the cutest little cry ever."  He didn't pay attention to me, as he was still checking out our little guy.

"8 lbs. 13 oz. & 21 inches long.  He's a big boy!" the nurse said.

"Get the camera!  Take some pictures"  I said, and he did. 

Kurt sat back down as the nurses did their thing and checked our baby out.  Me, on the other hand.  I started crying.  Not because they were tears of happiness and joy, but because I just gave birth without a freaking epidural.  It was seriously so intense and so crazy.  It was all I could do, was cry.  I got cold.  I started shaking.  I couldn't stop crying.  I asked the Dr. if it was possible to go into shock after giving birth.  "Yes it is very possible."  I was in shock. 

After about 20 minutes, maybe longer of me crying like a sissy, the Dr.'s patience ran out and she was like, "we still have to deliver the placenta."   "No, I can't.  Just leave me alone."  She replied to the nurses with something like, "She's not going to."  And started to take her gloves off like she was annoyed.  A nurse talked me into it, and I finally delivered the placenta.  The Doctor then told me that I did wonderfully and she left. 

As one nurse was still tending to our baby, two other nurses were cleaning up.  The shock of it all had started to wear off and I had pulled myself together. 

I still hadn't seen the baby yet, and I asked Kurt who he looked like.  "He doesn't look like any of our boys," he said as he sat back down after looking at our son. 

Kurt looked tired, and his eyes red. 

"He's actually really homely looking."  What?  Kurt's not one to think newborn babies are all that cute, neither do I; but I was a little taken back by his sarcasm of our newborn son. 

One of the nurses cleaning up looked at the other nurse and whispered something under her breath.  I couldn't tell what she said, but it was obvious they were talking about Kurt's comment, or so I thought.  I thought his comment may have been offensive to them. 

They finished cleaning up and they left.

The nurse tending to our son asked if I would like to hold him.  "Yes I would!"  She brought him over and handed me my newborn son all swaddled tightly in a blanket.  I looked down at him and he looked right up at me and kept blinking.  As he blinked his right eyelid would flip up and out.  Whoa, I thought.  That is not normal.  I looked over at Kurt.  He had that look on his face where I could tell that he was about to cry. And it wasn't a joyful cry look, but a "I just couldn't tell you" cry look.  I looked back at my son.  His eyelid was freaking me out.  I studied his face, and thought this isn't my son.  He doesn't look anything like my kids.  I knew he was swollen and red from just being born, but something was amiss.  I looked back at Kurt.  He was crying.  I looked back at my son and upon further inspection new that something was not right.  I started to cry.  I looked over at Kurt and said, "Is he a special baby?"  Kurt nodded as tears rolled down his face.  The nurse came to my bedside and sweetly said, "Just love him.  Just love him like you love your other kids."  I just stared at him, and he just kept staring up at me and he kept blinking.  And the tears, they just came.  And they didn't stop. 

The nurse said that she had to take the baby to the NICU, as he may have some complications.  She left.  And Kurt and I were left alone in the room.  I don't even remember what we said to each other.  I know I was feeling shock and disbelief.  I can't speak for Kurt.  The only thing I remember is Kurt saying, "Our lives will never be the same."

{No pain, No gain}

31 for 21 blog challenge day 3.

At 1:00 a.m. we pulled up to the front doors of the hospital.  Kurt left the car running (thinking he'd get me checked in and zip back out to move it) and quickly hopped out and was ready to walk me in (as any good man would do-hurrying to help his lady).  I told him that he can't leave the car running while we went in, and waited for him to park it in the lot. 

We took the elevator to the 2nd floor and found the check-in counter.  All of the nurses were sitting around listening to the the nurse with the long blond hair go on and on about how she was losing her hair and was going bald.  One nurse left the conversation to help me.  The girl just kept talking and talking oblivious to the fact that the other nurses didn't really look like they cared.

The nurse had me sign a bunch of papers and told me that they would call the on-call Dr.  "Yes, tell Dr. Burgett that I am ready to have this baby."  "Oh, he's not the on-call Dr. tonight."  "Yes he is, he told me he was on-call until Sunday."  "Well he is, but he's already been on-call for the last 3 nights and has been up for 4 days straight, so he asked someone to take his shift for tonight."

Great.  I didn't get my Dr. the last time I had a kid either.  What's the point of having a Dr. if they aren't going to be delivering your baby?

They took me to my room and had me get situated. 

 

I had Kurt snap this shot to get one last photo of me being pregnant. 

 

Little did I know that this photo would be the last photo that we took of the normalcy of our lives as we knew it.

 

"Let's do this," I said.                                                                                          

 

I had Kurt set up my tunes.  I was really wishing that we were up to date on our technology and had an ipod of some sort (yes, we are that far behind on the times).  My method of coping with contractions is to mute out the pain with the volume of music.  Headphones are good.  You can turn it up as loud as you want and everyone doesn't have to hear it.  I swear it works.  Or at least helps.  The worse the contraction gets the louder the music goes.  I compare it to getting hurt.  If you hurt your hand and then someone kicks you in the shin, you forget about your hand.  (Well you forget about your hand for little bit.)  Same thing.  The music is so loud that you can't hear your contractions.  And by hear, I mean you are concentrating on your music that is muting out the pain.

 

As the nurses came in they all mentioned how pleasantly surprised they were when the music they were hearing wasn't Enya, piano music, or ocean waves.  Ocean waves!?  How do ocean waves pump you up?  We gots some serious work to do, I'm not trying to goto sleep!  Kid #5 Song List consisted of Pink, Blink 182, The Killers, Snow Patrol, and Metro Station.  Because I only had access to my laptop, it wasn't convenient to have it close and so I couldn't use my headphones.  And therefore had no control over the volume.  Which bugged me and was distracting for me.  But it was ok, because things went pretty quickly. 

 

The nurse checked me and told me that I was dilated to a seven.  She also told me that I needed to decide (quickly) if I wanted an epidural or not.  I went back and forth.  My pain was bearable. I was going to have to pay out of pocket for the epidural.  I've had 2 other kids epidural free (not by choice). 

 

I said, "Let's do it.  No epidural."  My thinking was, if my pain is this manageable and I'm at a 7 (and I go fast), I think I can handle the pain at a 10. 

 

STUPID.  IDIOTIC.  WHAT WAS I THINKING!

 

I progressed quickly to a 10.  It was go time.  Kurt was feeling a little light headed (from not eating) and asked if he could sit.  He sat.  It got INTENSE.  The nurse kept singing along to my songs (which was a little distracting/annoying) as I was trying to birth a my baby. 

 

The pain was crazy!  Like super crazy.  I seriously thought I could handle it since I was doing just fine at a 7......what in THE HELL was I thinking?  Don't do it.  If you are thinking about it.  Don't.  Ok... Do it once, just to say you did; but NEVER do it again. 

 

I'm sure the on-call Dr. thought I was an idiot for not getting the epidural.  I could tell at one point she was getting flustered with me, because I wasn't cooperating with what she was telling me.  It was at that point that I had to talk myself back to reality.  "There is no going back.  You cannot go back and undo this pain.  The only way to get rid of this pain is to go forward.  Go through the pain only to get rid of the pain.  It sucks, but it's the only way out." 

 

And that's what I did-pushed through the pain.  And by 2:14 a.m. I gave birth to a baby boy.....

{Let's start from the very beginning.....}

Which was only 4 short months ago.

31 for 21 blog challenge day 2.

It was a hot summer afternoon in June.  We went to church, came home and ate, did our usual vegging out routine which consists of watching t.v. and napping, and just lazily grazed in the kitchen.

"Come on" Kurt said.  "We're going on a walk.  We gotta get this baby here."

He dragged me (literally) up the hills in my neighborhood.   We went down the street and back up.  Not very far.  But it was far enough for me!  I was hot, tired, exhausted, and out of breath!

Needless to say, baby was not too impressed as there was no sign of wanting to make an entrance into this world yet.

The next day I had a Dr. appointment.  "Good news!  I'm betting that I will be seeing you tonight and delivering a baby."  Serious.  Are you serious?  Saweet!  Two and half weeks early, I'll take it!

I called Kurt and told him the news.  "Perfect.  We can get this little guy here and I can still make it to my conference on Wednesday."  That was what we were hoping for, as Kurt had to attend a conference in Midway.  The  registration alone cost him a pretty penny and we didn't want to lose out on that money as it was to late to get a refund.  The timing couldn't have worked out better.

Well.  Monday night came, and Monday night went.  No baby.  And Tuesday day came and Tuesday Night followed.  Still no baby. 

At this point we were nervous because Kurt's conference was the next day, Wednesday.  And there was no way I was letting him go if this baby hadn't come.  Wednesday morning Kurt called the conference people and gave them some spiel, and was able to get out of the conference AND get this money refunded.  (thank you!)  Now to just get this baby here as Kurt had Wednesday to Sunday where he didn't have to go into work.  Just enough time to have a baby, get home, and get settled before sending him back to work.

I went to Target that afternoon to pick up some last minute baby items.  Upon my arrival I found Kurt sitting in a chair, basking in the sun while reading a book, and watching the littles play in the yard.  He was anxious upon my arrival.  "What if this baby doesn't come while I have this time off of work?  I'm feeling guilty because I took time off of work to goto the conference, but I'm not going, and I could be at work.  And then I may have to take more time off work if the baby doesn't come before Sunday."  (He was planning on taking time off of work, just not this early and so close to already taking time off for the convention.  It kind of messes up the scheduling at work.)  We made the decision to call the doc and see if an induction was an option with this short of notice. 

By the time we made the decision, it was too late and I couldn't get a hold of my doctor.  We decided to call in the morning. 

After dinner we decided to go on a walk.  Kurt was going to walk me to my death trying to get this baby here.  We walked around our neighborhood.  Surprisingly I wasn't tired or having to be pulled up the hills.  I had an abundance of energy.  We decided to keep walking.  We walked up into the neighborhood above us all the way to the end of the road.  We walked for about 2 hours, I'd guess.  And I was still doing fine for the most part.  I wasn't completey exhausted like I was on the last walk we went on.

When we got back, our neighbors were outside so we stopped and chatted with them for a while.  After a while I finally went in.  It was 10:45 p.m.  Kurt stayed outside for a while longer and chatted it up.  Me, I was on the computer googling ways to induce labor.  And man, there is some weird stuff one can do.  I did try one method.  I won't say which.  But I seriously believe that it worked. 

Kurt came in the house around 11:30 and went downstairs and watched t.v. 

I started having contractions, but wasn't sure if it was true labor.  I started timing them.  After about 30 minutes, they seemed to be consistent, but they were a little up and down so I wasn't completely sure, thinking that they may be Braxton Hicks.  At midnight I told Kurt that this may be it, but still wasn't 100% sure.  We decided that we were going to go to the hospital anyway, even if it wasn't true labor hoping that they could tell me how close I was and hoping that they would just keep me there. 

I finished packing up my suitcase, got the kids situated, and we hopped in the car. 

On the way to hospital, the contractions were spot on consistent.  Three minutes apart, each one lasting 30 seconds.  This was it.  I knew it was true blue labor.

It was go time.....

{31 for 21 Blog Challenge}

 

The month of October is Down Syndrome awareness month.  This year marks the 6th annual 31 for 21 blog challenge.  What's the challenge?  Well, let me tell you.

 

Down syndrome is medically known as Trisomy 21. Trisomy 21 is for the 3 copies of the 21st chromosome that individuals with Down syndrome have.

There are 31 days in the month of October.

The blog challenge is to blog for 31 days for Trisomy 21. Blog every day in the month of Oct in honor of National Down Syndrome Awareness Month.

I have accepted this challenge in hopes of spreading the awareness, my thoughts and feelings, and Finn's story amongst my family, friends, lurkers, strangers, and web surfers alike. 

Who am I doing this for?  This little guy.  Finn.

 

{Finn Update}

Finn had another ABR (hearing test) done today and GREAT NEWS the hearing in his left ear has improved!?!  On his previous test I was told that he had no fluid in his ears which meant that the mild hearing loss was most likely real true blue mild hearing loss.  So I wasn't expecting much of an improvement with this test. 

BUT the test showed him hearing at the normal 25 decibels whereas before on his last test he was hearing at 40 decibels (40 decibels=mild hearing loss).  There was only one sound/pitch that he had to have at 40 decibles this test and that is the sh/ch sounds.
 

We must be doing something right.  What a blessing.  With this change in his numbers, I was told that he definitely is not a candidate for hearing aids.  A double blessing because our insurance doesn't cover hearing aids.  They are Expensive!  He will have a couple of more tests done in 6 months to see that his hearing is keeping in check.

*****

 

After visiting with the ENT and looking at Finn's saturation levels while sleeping from his sleep study, I was told that I needed to keep him on oxygen.  I haven't been putting him on oxygen lately because he looks and sounds fine when he's sleeping.  He's not waking up like he used to a month ago.  Come to find out, although he looks like he's sleeping he is getting restless sleep.  Which basically means that he isn't getting good quality sleep.  Waking up 17 times while sleeping and 26 times during REM sleep.   

 

And so the battle with the cannula begins.  He moves and rolls around and so the cannula (the thing that shoots oxygen out in his nostrils) is always coming out.  I am constantly checking on him and putting it back in place.  He also has these two little round band aid looking stickers that he has to wear on his face all the time to help keep the cannula in place.  They only gave me 5 sets, so I can't keep taking them on and off his face because they lose their stickiness.  So I have to leave them there all the time.  Even during the day when I take him places. 

 

I asked the doctor how long I should keep him on oxygen.  He said well, bring him back in a year and I'll check him.  WHAT!  One year????  That is a long time.  I may be having his cardiologist check him out sooner.....

 

*****

 

I finally made my reality of having a child with Down Syndrome official and I made the call to the early intervention people.  The people who come and evaluate your child and tell you what kind of intervention (therapy) he needs.  I felt very blessed and proud after hearing her say that he is doing awesome.  Wondering if she was just being nice, I asked and prodded with questions as to where Finn stood up to other kids she's seen with ds at his age.  Not that I should compare, as all kids are different, but she said that he is at the top end of the spectrum.  What she said is by no means any indication/diagnosis that he is or will be high functioning.  It is just at that moment of observation that he is doing very well.  He could be totally different at her next visit.  Still such great great words to hear.

 

The only area that was lacking was his neck and low muscle tone.  So we will be working on getting his core and neck muscles strong so he can hold his head up.

 

*****

 

So Finn is doing great!  He is such a cutie!  He loves to talk and will stare and talk (coo) to you forever.  And he smiles All.The.Time.  He is a happy baby.  He only cries if he's really, really hungry.  And when he really gets crying it's hard to get him to calm down, even with his bottle.  He gets so sad/mad that he cries because he is sad/mad.  So, feed him before he gets to the cry stage and you're good to go. 

 

He really is doing great.  And I am grateful.

 

 

{Patience.......A milestone}

 

 

 

I knew this day would come. Reality. It has come. It came the other night, but hit hard the next morning.

 

I've been noticing that Finn's core strength is not strong and that his head control is not that of a typical child.  Seeing other babies his age holding their heads up is what did me in.  The first milestone that he should be hitting, he's not.  I didn't think it would be a big deal or effect me like it is.  But it is. 

 

I guess the Natural Man, or my pride, is getting to me; making me sad.  Sad for me or sad for him?  I thought it was for him.  But after much thought I guess it's more sad for me.  As a mother, you want the best for your child, and knowing that he is/will be delayed is a hard pill to swallow.  I had my moment.  Albeit lasted all day and all night.  The waterworks were turned on and they just kept running.  After seeking words of encouragement from other mothers who have been down this road, I have come to the conclusion that one of the many reasons Finn was sent to our family- to Me, is so that I can 1. Learn patience  and 2.  Slow down and enjoy the little things.

   

I've told Kurt that I ran out of patience about 3 kids ago.  My patience level is about non existent.  Because I will have no choice, patience is something that I will have to reinstate as Finn develops.  A characteristic that will be good for my being.  As Finn does hit those milestones, because it will take him that much longer to do, it will be those little things that he does that will bring us joy.   It will be important that I learn to appreciate the things that he can do and not dwell on the things that he can't do.  He is his own person, and I owe it to him to celebrate him and his milestones; not the milestones of others.

 

While it is hard, I KNOW that in time, Finn's time, he will hold his head up. And that is nothing to be sad about. 

{Can You Hear Me now?}

I took Finn in for his hearing test (ABR-more extensive hearing test) and got the results back immediately after it was done!  And the verdict is:  He Can Hear!!!  His right ear tested normal; hears fine out of it.  His left ear was diagnosed with mild hearing loss.  Huge relief for me.  I thought he had moderate/total hearing loss in his left ear.  Whew!  So thankful it's just mild.  What's mild?  On the test 25 (decibles?  not sure what the label is here) is normal hearing range.  He had to have it turned up to 40 so he could hear it normal.  A 40 scores in the mild hearing loss range.

As of lately, I could tell that he was hearing.  BUT prior, from birth to the end of July I knew he wasn't/couldn't hear me.  He failed two newborn hearing tests before doing the ABR test, which was really discouraging to me.  When I took him to do the ABR test, they did another newborn hearing test and he failed again.  Which surprised me, because the ABR confirmed that he could hear.  The audiologist told me that the newborn test is strictly just a pass/fail test, the ABR test detects ranges, pitches, and wavelengths and is more concrete.  There are a few factors that can cause failure of the newborn test.  If the probe is hitting the wall of the ear canal, wavelengths don't get to the eardrum and that will cause it to fail.  If there is fluid in the ears, it causes blockage so the wavelengths don't vibrate in the eardrum like it's supposed to.   So although he failed and at the time made my heart sink, it was kind of misleading and I stressed for nothing.  Funny, right.....  I wish someone would have explained why babies often can fail the newborn test.  When he failed twice, I told myself that I wasn't going to freak until it was time to freak.  So glad I didn't freak out, it would have been for nothing.  I was very concerned and stressed a little.  But I am glad to know that the time to freakout isn't/won't be coming.

From birth to the end of July when I knew he wasn't/couldn't hear me he did have fluid in his ears.  Which when you have fluid in your ears it's like hearing when you're underwater.  You can't.  It's not clear, it's muggy.  And this explains why he wasn't/couldn't hear me during that time. 

Tubes and a hearing aid could be coming in the future.  Not sure yet.  We will be visiting a pediatric ENT to check for fluid in one month and then he will do another ABR test to make sure it coinsides with the first ABR.  And then we'll decide where we go from there.  For now, we are happy to have crossed this hurdle. 

Finn had his sleep study done last night.  We were to be there at 8:00 p.m.  It was downtown at Primary Children's Hospital.  In order to get there on time I needed to leave by 7:00.  I left at 7:10, and had to stop and get gas.  As I got on the road, I realized that I forgot to grab my phone that was charging on the counter.  I couldn't turn around as I was on a one way road, and if I did go back, I would most likely be late.  I didn't go back.  BUT anxiety set in.  A whole night without my phone.  Was it possible?  It was the feeling you get when you realize that you forgot to pack your makeup bag for a trip.  I wouldn't be able to call or text Kurt.  What if someone needed to get a hold of me.  What if I wasn't allowed to use my laptop and my phone would have been my only saving grace for an entire night of sitting in a dark room with absolutely nothing to do?  I don't even have a data plan on my phone, but I think I'm addicted to having it with me at all times. 

We got there at 7:55-right on time.  Parked next to me was a suburban with two gentlemen sitting in the front seats wearing suits and ties and they were praying.  I didnt' want to disturb them, so I stayed on my side of the car (as they were parked on the passenger side) and gathered the diaper bag and all of my "toys" (minus my phone)  and waited for a couple of minutes to see if they were finished.  They weren't.  Finn was on the passenger side, so I had to go right next to their car to get him out.  You could tell they were fervently praying.  I got Finn out as quietly as I could, shut the door, and began to walk off; but not before glancing out of the corner of my eye to see if they were done.  They were not.  They were still praying.  It made me think.  Who were they praying for.  Was it a child.  A parent.  A friend.  From the way they were praying, I would say something serious was going on.  You could feel the reverence as they both sat there with their heads bowed, eyes closed, and the person in the driver seat offering the prayer.

Once checked in, we were taken to our room where they began to prep Finn for the night ahead.  They first used this jelly like substance followed by some Crisco looking paste to put all the electrodes on him.  There were 26 electrodes in all.  He had them all over.  After they got them all on they put a mesh cap on this head so he couldn't pull them off, then they taped all of the wire strands together so they weren't all over the place.  They then placed a cannula in his nostrils.  I fed and changed him and then he was out.  He slept through the whole night, I didn't have to pick him up once.

Once he was out, I ran to the cafeteria to get some dinner.  I hadn't eaten yet.  I got there with 2 minutes to spare, as they closed at 10:00 p.m.  Once I finished eating I returned to Finn's room and played around on Facebook for a while, and then got caught up on missed episodes of Project Runway.  At 2 a.m. I put my laptop away and tried to get some shut eye.  I was sleeping on one of those fold out chairs that they have in the maternity wards for the husbands to sleep on.  They. Are. Not. Comfortable.  At 5:00 a.m. I woke up and just sat there watching the monitors wandering what all the squiggly lines meant.  At 6 a.m. on the dot, the sleep techs came in and we were done.  It was time to get all the electrodes off and we could go home. 

To get the tape off that was holding the electrodes on was like pulling off a band aid.  It hurts, right?  Well, Finn screamed and cried.  When they got them all off, he looked like a ball of butter.  We all know what butter is-GREASY.  What they didn't tell me in the preliminary details was to bring your ugliest outfit and your cruddiest blankets because they would most likely be covered in buttery, Crisco like goo and will probably get ruined.
 
We won't get any test results back for 8 to 10 weeks.  Apparently there is only one person in the entire valley who interprets the sleep studies done at Primary Children's Hospital.  ONE!  and she has her own private practice as well.  And so we will wait.  Finn is being tested for sleep apnea-where the body stops breathing for a period of time (which I don't think he has). I think he has an obstruction that is blocking his airway causing him to stop breathing for brief periods of time, such as his tongue or adenoids.   

{Awww Crap.}

I took Finn in to meet with his ENT today.  We were hoping that the meds cleared up the fluid in his ear and that he could hear.  Well, the meds did clear up the fluid in his ear.  Yay!  BUT after taking another hearing test,  he failed in both ears.  So sad.  Basically he has hearing loss.  How much?  We don't know.  He is scheduled for an extensive hearing test where he will have probs hooked up to him that will test brain activity and a bunch of other stuff, and it will be able to tell just how much he can hear. 

I kept asking the Doctor a bunch of questions, and he didn't like me jumping to conclusions without having the results from the upcoming hearing test to be done.  Here are a couple of things that I gathered from our conversation- It is highly likely that Finn could have hearing aids.  If he has nerve damage that he was born with he could have permanent hearing loss and there is no fixing that. 

I have confidence that he will be able to hear out of his right ear.  It may be with the help of a hearing aid, but I believe that he will be able to hear out of it.  The left ear...... I don't know.  I'm not so confident about that ear. 

I swear when I took these pictures that he heard me talking to him.  At least I like to think he heard me talking to him.  I still can't believe that he hasn't been hearing me all this time.  It makes sad.  I had my moment, (thanks for the listening ear Emily K.) but I'm over it.  I'm not going to freak out until it's time to freak out.

Now if someone at the audiologists desk would answer their dang phones so I can schedule the appointment......

{Dr., Dr., Dr., Dr., Dr.}

My ode to the movie Spies Like Us.  This is what my life has been like this week.

It all started with a visit back to the hospital so Finn could have his hearing screened which should have taken place when he was born, but he never got tested as their machines were down.  After a mistake made by the nurse of writing down the wrong date, he was finally tested Monday (7 weeks later).  It took about 10 minutes and we had confirmation of failure in both ears.

Before getting screened, I knew he wasn't hearing out of his left ear, but I knew thought he could hear me out of his right ear.  When I saw that he failed both ears, my eyes welled up with tears.  The tech said that we could do the test again, but I told her no.  We went home and made an appointment with an Ear, Nose, & Throat Doctor. 

That same day after getting his hearing screened we also saw the Doctor of Cardiology who did an EKG.  The results showed that the right side of his heart was enlarged due to either volume of blood or pressure.  It also showed that the hole in his heart was about 3mm.  We discussed that his waking up while sleeping could have something to due with his lungs, which could be linked to his enlarged heart, and so we have an appointment scheduled with a sleep doctor for a sleep evaluation and then a sleep test to see if he has sleep apnea.  We also have an appointment scheduled with a pulmonologist to check out his lungs. 

Two days later we got in to see the ENT Doctor.  He checked for fluid in his ears, which is what I thought it was and hoping it was, as alot of children with down syndrome have fluid in their tiny ear canals blocking any vibration.  Usually putting tubes in the ears fixes the problem and hearing resumes.  The Doctor told us that he had fluid in his right ear, but no fluid in his left ear.  I immediately knew what this meant.  It meant that since there was no fluid in his left ear that there is some degree of hearing loss in that ear.  To what extent, we don't know yet.  The fluid in his right ear has created some hearing loss as well.  I do know that he can hear somewhat out of his right ear, because when Kurt plays his guitar he kind of perks up.  He can also hear when the kids yell.  So we have him on antibiotics to clear the fluid in his ear, then we'll go back and make sure it cleared, then we'll put tubes in both ears, then we'll go and have his hearing tested to see the if there is hearing loss and to what degree.  It's a process.  It is sad to know that my little boy probably hasn't been hearing me talk to him for the last 7 weeks. 

This morning we are on our way to see the Doctor of Pulmonology. 

It seems like I've been on the phone non stop for 3 days to make sure that all the doctors are in our network and the tests they are doing are covered through our insurance.  Although it's a pain, I am grateful that our deductible has been met and everything that is and will be taking place over the next several months will be paid for.  I am also grateful for technology.  It is so cool what technology can do.  It's actually pretty amazing. 

We are on our way to getting our little guy the healthiest he can be.  He continues to be a sweetheart, and is a great baby.  He is getting big.  He is up to 11 pounds and just started requesting 6 oz. of milk instead of five.  Here he is sleeping peacefully, which will be interrupted by a quick shortness of breath, and then no breath, and then catching his breath, and then back to sleeping peacefully.  I love how he sleeps with his arms up by his head.  He's not one to have have them bound and swaddled.