Emily Dickinson

Hope

 

 

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

Holland

From Jordan...we love this...

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.

L B S

Parker is finally over his birth weight!  It has been quite a struggle with each feeding taking over an hour (and then there is pumping time!), but it is worth it!  Little man doesn't have to go back to the pediatrician until January -woohoo!  We are also free and clear to travel to Springboro for Christmas.  So Thankful.  I can't wait for him to meet everyone!

Appointments...

The reality of having a child with special needs is attending so many appointments.  I am so grateful for all of the early intervention possibilities available for Parker, but so very overwhelmed by their demands and choices.  Upon diagnosis, the hospital enrolled us in the state's version of early intervention, as well as the private, hospital version.  Both will evaluate him, and then it is basically up to us which avenue to go with.  This includes physical, occupational, and speech therapy...which really start to become important for him around 3 months of age.  

In addition, Parker failed part of his hearing test, and needs to be seen by a cardiologist for his heart.  And until his weight is consistent and stable over time, we will have frequent pediatrician visits.  Needless to say, we will be getting to know doctor's offices and our insurance plans very well...a prospect that brings me a lot of anxiety as a non-detail oriented person.  

Today's pediatrician appointment was so-so--- Parker is still having trouble gaining weight.  Let's hope the next several days get better, and we can get him back to his birth weight!

Tummy Time!

Right now, there are only two things we have been told we can do to help Parker develop and progress.  First breastfeeding, which is becoming the bane of my existence.  Because of his mouth control, it is hard for him to breastfeed, causing him to basically tire out after about 5-7 minutes.

Second is tummy time!  Fifty percent of his awake time is supposed to be spent on his tummy to help strengthen core muscles and head control.  From the first time we tried it, Parker has been able to push himself over onto his back--we finally captured it!  Like all crazy parents, we have been proud of this...even if he sometimes arches his back instead of pushing himself over!  I hate hearing him get frustrated, but know how important it is for him to practice.  The definitions of excitement and a "good time" are much different for us now...and I wouldn't change it for anything.

"Show Me"

Our first pediatrician appointment on Monday went great!  Parker gained 3 ounces, his color was looking better, and of course, he peed all over the nurse and scale!  We were so excited to FINALLY get a good report from a doctor, as up until this point, it seemed like doctors were only around to tell us bad news.

Obviously, with Parker's multiple diagnosis, we have a lot of questions that no one can really answer for us...but we ask anyway.  It seems that there is no real information about children who have both Down Syndrome and Klinefelter's Syndrome.  The two tend to have some similar traits and some opposite traits, even though Klinefelter's can be something that men live with all of their lives and don't know about.  For example, typically with DS, children have shorter limbs, whereas with KS, children are taller and lanky.  We think this is why during ultrasounds, Parker's measurements all turned up normal instead of accurately indicating DS.

None of this stops us from foolishly trying to predict what Parker's capabilities will be...which I am sure every parent wonders.  

Dr. Peters, one of our pediatricians, had an amazing term for this...he said Parker will be a "Show Me" baby.  He will show us all of the amazing things he is capable of in his own time, in his own way.  He will do great things, even if they may be a little different than what other kids can do.

This really resonated with us...that we have to blindly accept Parker's challenges, and just do everything we can to help him grow and be pushed to his fullest extent. 

Homecoming Day

The car ride home from the hospital is one of our favorite memories...one that we will hold closely.  It marked so many things for us...health, independence, family, thankfulness...and so much more.  Parker was not a huge fan of the car seat, but passed out pretty quickly.  So much love for this new life!

NICU Experience

The Tuesday night after Parker was born, he stayed in the nursery for monitoring while we went home...a pain I will never forget.  The next day, our neonatologist (Dr. Fisher) told us that he would need to spend a few days in the NICU, again not allowed to come home with us.  His sodium and potassium levels were too high, showing that he was dehydrated.  Closely matched with the pain of not taking him home is the pain of seeing an IV in your newborn's head.  

Though his time in the NICU was extremely difficult for us, I can't speak highly enough of the staff and facility at Northwest.  They allowed us to call in 24 hours a day to check on Parker, feed him and snuggle him (as much as you can snuggle with a baby hooked up to so many machines), and taught us tricks to help us better care for him.  

Dr. Fisher was a godsend...some may feel that he does not have much of a bedside manner, but all we needed at the time was someone to just be blunt and honest with us.  We knew that under his care, Parker would get what he needed to be healthy enough to take home.  His expertise and attention to detail helped Parker get better.

Even though we were devastated by his admittance to the NICU, it was really a blessing, because we got to take Parker home confidently, knowing he was truly well enough to be with us.
 

Roller-coaster Week

The past week has been quite a roller-coaster ride for the Preis family.  It has by far been the most joyous and the most painful week of our lives.  The morning after he was born, we were told that Parker has Down Syndrome, and a few days later, were told that he also has Klinefelter's Syndrome.  In addition, he has potential cardiac and hearing issues that we hope with all of our hearts are just temporary.  

During this week, Matt and I have really had to dig deep within ourselves and within our marriage to cope with the different things we found out.  On some days, we had great successes, like getting Parker to eat, my milk coming in strong, and getting to snuggle with him.  Other days were straight from hell, where every time a doctor spoke to us, it was to tell us another problem that we had to face with this new little baby that we already love so much. 

We have been blessed to have the most amazing family and friends to look after us, pray for us, and help us.  They have been by our side every moment, and for that we are forever grateful.  

Even though Parker's life isn't going to be what we originally invisioned, and there will be moments through out the next days, weeks, months, and years where we break down and struggle, our little boy is perfect to us and for us.  We couldn't ask for a more special gift, and are thankful for him every moment of every day.  

Parker's Birth Day!

After having severe back pain all of Thanksgiving (Matt's birthday!), I decided to call the doctor Friday morning, the 23rd.  I wasn't really having stereotypical measurable contractions, but still quite a bit of pain that kept me up at night.  They told me to just come in and get checked to see if anything was going on.  Little did I know that I was already 6 cm dilated!  The doctor was stunned, and was announcing it to everyone in the office that "this patient just walked in here smiling and is 6 cm dilated!) We didn't even get to go home to get our bags-  I was wheeled straight to the labor and delivery hall. 

Within 2-3 hours, I moved to 8 cm, and the nurses started setting up the room for delivery.  We were told that things would move very quickly based on what they had seen so far....boy were they wrong.  My contractions were not measurable on the monitors because they were basically constant, and in my back.  I ended up stalling at 8 cm.  Epidural? Yes please! 

After moving so fast, it took me about 8 hours and a LOT of Pitocin to move from 8 cm to 10 cm: pushing time.  Because my contractions were not measurable, pushing was difficult.  After 45 minutes or so of pushing, the nurse decided to put a scalp monitor on Parker's head to better see his heart beat, as it seemed to drop during each pushing session--which was scary for us, as no one wants to hear about a monitor attached with a hook to their baby's scalp.  The nurse inferred that the cord must have been wrapped around him somewhere.

After an hour and a half of pushing, baby Parker's heart rate dropped well into the danger zone.  It appeared to the nurses that he was in the "sunny side up" position, and struggling to get past my pubic bone.  They stopped me from pushing, and called Dr. McCool back in.  At one point, Matt saw baby's heart beat hit 0, and the decision to rush a c-section was made.  I was wheeled into the OR, and surgery started very quickly.

Parker Jonathan Preis was born via C-section at 10:02pm on November 23, 2012!  Hearing his first cry was the most incredible experience that I will never forget.  He weighed 7 pounds and 1 ounce, and was 20 inches long.  

Though the c-section was difficult and recovery is a tough,  we are blessed with this sweet baby boy that I get to spend the next 8 weeks with.

Welcome, sweet baby, we love you with all of our hearts!