Pondering the Night Away

Tonight was a hard night for some reason. We have so many great things going on in the next week that we are so excited about... But there is something about a long car ride that encourages (forces) deep thought.

I started thinking about how Parker is almost 4 weeks old already. He had made such strides! I have to admit, though, that part of me mourns the passed time because it goes by so fast and I can't get it back. Of course, I am also trying to slow down time because I know that once I go back to work, I will only get about 3-5 hours a day with him.

I also started thinking back over the past few weeks. Part of me actually misses being pregnant--and that shocks me because I remember hearing women say that when I was about 38 weeks and thinking they had to be nuts...but I do miss it. I miss having things be simple...I miss not knowing his diagnosis, and I miss being able to keep him healthy and safe so easily. I hate even thinking any of those things.

I keep going back and forth between blocking out the emotional pain of the week of his birth versus the joy of bringing him into the world as ours. Right now, the experience is still mostly clouded by pain and grief, but I hope that one day I will look at it with only peace and thankfulness.

For now, I am so in love with this little boy and our little family. I am so excited for everyone to meet him and to bring in a new year with him in my life.

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.