Some Days Are Rough

James is pooped! Poor little guy has had some bowel issues lately as his diet changes. It has been one of those days where all three crib sheets are in the wash because of throw up or stomach tubes malfunctioning. So James and I are chilling in a little coffee shop shaking it off. James gave a few smiles before conking out. He is determined to keep the car seat handle up, though. It doesn't look like the Internet here will let me upload the picture. Boo. With love.

Lots of Excitement!

As we look forward to James' Early Intervention review tomorrow (we will go over milestones, goals, etc) I have taken a look through some recent pictures and find myself continuously reminiscing about how far James has come.

His hands are much stronger and he is getting good at holding objects!  The other day I even saw him switch the ball he was holding to his other hand.  That is a pretty big deal!

He seems to enjoy eating "The Swan Princess."

His suck is getting stronger.  He doesn't get much out, but he really enjoys the bottle.  He can get his mouth around the nipple and pull on it a few times which is big progress! Look at those mouth muscles!

I never thought I would see this (ok, yes I did, but the waiting was rough)!  James is getting really good at holding his head up.  He even rolls on his stomach and reaches for toys!  Wow!

We have been extremely excited about the end of cold and flu season which means trips outside the house and, finally, a baptism ceremony!  Yay! (Awesome baptismal gown courtesy of Aunt/Godmother Trena)

Our little cutie is getting into everything and, I am sure, will be moving around getting into lots more trouble very soon!

With love.

All the Cool Kids Roll on their Tummies!

James' new favorite pastime is rolling onto his stomach.  His head control is getting much better and we are hoping he will be able to hold his head up on his own later this summer!

Doing great, but the bars become a damper very quickly!

With love.

Open Wide!

OUR BOY IS EATING!!!!!  I can't tell you how overjoyed we are to write that sentence!  Last week was a very rough oral stimulation week as James was just coming off a formula that made him sick.  The added reflux from stomach irritation caused him to refuse items headed toward his mouth.  So, last weekend, his feeding specialist revamped the plan.  James likes biting the rubber baby spoons so we moved in that direction.  A big part of James' path to eating is learning how to control his posture.  Because of his low muscle tone his arms and legs naturally fall to his sides in an overextended position.  That means it takes more effort to bring his hands to center because he has a longer distance to move them.  Also, as he lays flat, his jaw tends to drop, making it difficult to use his mouth muscles.  So:

Part 1: Positioning

It is difficult to swallow while laying prone, legs and arms splayed.  Try it, you can feel the tension around your throat.  So, in order to facilitate muscle ease we first concentrate on helpful positioning.  In the past we used pillows to create an elongated posture, but James liked to roll off these pillows.  So, our new approach is to put him in his car seat, preferably on the kitchen table, propped to a 80 degree angle, and sit in a chair below.  This keeps his spine and chin elongated and looking down, aiding the muscles as James opens, closes, and swallows. (We sometimes cheat and sit on the floor as you will see in the pictures below.)

Part 2: Play

James needs to learn to enjoy eating.  With the original nose feeding tube and his reflux issues his throat has gone through a lot of unpleasant feelings.  So, to make him feel at ease we sing songs and play with puppets, showing him that his car seat is a fun, safe place.  His favorite is "Twinkle, Twinkle, Little Star."

Playing with puppet!  The puppet "kisses" James up and
down his body to stimulate nerves and muscles.

Part 3: Food

Once James is comfortable and having fun, we hold a spoon of sweet potatoes to his nose, allowing him to smell, preparing to "welcome" it into his mouth.  We encourage him to play with it, buzz his lips, spit it back out, so that he becomes comfortable with the taste and texture.  James has been doing well taking bites and swallowing, but today he beat his record!  He ate a whopping three spoonfuls of baby food!  Way to go, James!

With love.

Excited to eat!

He wants more!  What a wonderful sight!

Tastes yummy!

He is so big and he knows it!

When One Door Closes...

It has been a year.  To be honest, March and April have been a little surreal and more emotional than I anticipated.  I didn't realize how deeply the events from this time last year left scars.  It has taken me a long time to be able to write this down.  Well, here goes the story of our journey to the open window.

I was so excited when I found out I was pregnant, I could barely hold it in.  That day at work was torture while I tried to take my mind off the news I had for my husband that night.  If you know my husband he, of course, was thrilled.  He wanted a family right away, something that scared me at first but I came to want as well.  We went to the doctor for confirmation and I received the typical "yes you are pregnant" phone call while walking through our building's lobby.  As I started to hang up and step on to the elevator the nurse stopped me saying something was wrong.  My hormone levels were much too low and they needed to get me on progesterone as soon as possible.  That terrified me.  I was already so attached to this child, I rode up to our apartment in shock, then sat on the couch sobbing, pleading that God not take this child from me.  Luckily, the pills did their job, an early sonogram showed no signs of concern, my levels stabilized and everything was fine.  We breathed a sigh of relief.

We looked forward to the 20 week sonogram as we had decided, after numerous name disagreements, to shelve the "name game" until we knew the gender of our child (less names to fight over).  :D  But, because of the early issues we were a bit nervous.  In the waiting room I heard other couples talking gender and heard the phrase "as long as its healthy" frequently thrown about.  Wow, very surreal.

Our sonogram seemed routine.  It was incredible to see the pictures of our child and we were excited to learn that we were having a son!  I was surprised by the thorough job of the technician, it seemed like a lot of pictures for a routine screen.  I asked if he was healthy, was everything fine, normal, and she responded yes, everything was fine, but she needed to bring in a more experienced technician to get a couple more pictures.  Ok, I thought that was just because our son was in an odd position, she had been trying to get him to move throughout the appointment.  No big deal.  We left with happy hearts, off to my chiropractor appointment, church, and maybe a celebratory dinner.  It was wonderful to talk to my chiropractor and his wife.  They were so excited for us, they being newer parents as well.  We called our families with the good news.  Then, as we pulled up to a nearby church I noticed a voice message.  I wish I hadn't listened to it there.  I still feel weak whenever I think about that doctor's voice.  I could immediately tell that something was wrong.  He told me that the results of the sonogram were expedited over to him and we needed to talk.  It wasn't news he would leave on an answering machine and to please call him back immediately as he would be  out of the office in minutes.  There was nothing we could do over the weekend, but we really needed to talk.  My smiling husband became concerned as my face changed.  I couldn't tell him, I didn't know what to say, I had him listen to the message.  He broke down as I sat there in shock.  What were we to do?  The office was closed.  Were we going to lose the baby?

That was one of the worst weekends of our lives.  For two days we had no idea what was wrong.  I called off work Monday so that I could spend the day talking to doctors.  First thing Monday morning we found out the news: hole in heart, shortened upper arm and leg bones, enlarged brain ventricle, thickened nuchal fold.  Most of this pointed to a diagnosis of Down Syndrome.  We needed to see a specialist.  We cried, we talked, we learned a lot about each other.  Turned out, God made us more compatible than we thought.  Mark tends to get his emotions out right away while I am still strong and by the time he recovers I break down and have a strong shoulder to cry on.  To be honest, I didn't know what to feel.  Of course I was scared.  I didn't know what this would mean for our lives' or our baby's life.  I wanted what was best for my child and that was where I was confused.  Was this genetic condition the "best thing" for him?  Should I wish it away so that he would have the "best" life possible?  I would eventually learn that we are the ones that determine that our son have the "best" possible life, we do that by loving him.  There was no reason for me to worry about his genetic makeup because no matter what his genetics make him who he is, the boy I love unconditionally.  I will admit that I tried to pretend like he didn't have Downs.  It was my coping mechanism.  I prepared for everything to be normal so that, if everything wasn't normal I would be fine.  Weird I know, but it worked.  After James was born the geneticist came to talk to us.  She told us the test results had not come back as of yet, but she was pretty sure James had Downs.  I think we surprised her when we normally and almost cheerfully said, "ok, that's what we thought."  Reality was easier for me to handle than the possible diagnosis.

I don't need to go into the whole gambit of doctors and appointments.  Suffice to say it was a crazy five months.  However, there is one story I do want to tell.  I talked to another mother who was put in a similar situation and fought back and I think other women need to hear it.

My obstetrics practice sent me to a specialist, a perinatologist, a great doctor who we trusted and liked more than the regular practice.  Through his care we received detailed sonograms to track the development of our baby.  He told us that we could not be sure of a diagnosis unless we received the amniocentesis testing, the symptoms could point toward several genetic disorders and, especially given the enlarged brain ventricle, it could be a fatal one.  He pushed us to make an appointment and we reserved a time for the following week.

Those next two days were almost as bad as the first weekend that we were kept in darkness.  I was a nervous wreck.  All I could think about was losing my beautiful baby boy.  We had a 1 in 300 shot that I would miscarry.  The doctors assured us that we would be fine but all I could see was that number 1.  Our baby had already beaten the low odds that he would have these conditions and this ratio was not reassuring.  Mark and I cried and prayed.  Finally I made the phone call and cancelled the appointment. There are very few times that I have felt such peace flow through my heart.  It was a wonderful feeling.

I called my obstetrics practice to inform them of my decision.  They tried to convince me otherwise.  Not only that, they told me I had a very small window left to get the procedure done.  That led to another terrible day, a tearful call to my husband at work and a supportive call from my brother-in-law. We would not have the procedure.

The obstetrician called me in to talk about everything.  I wish Mark could have been there with me.  I already had so many emotions affecting my actions that it was hard for me to have a coherent conversation with the doctor.  I hope to be able to write a letter explaining my situation so they can improve their approach for the next time someone is in my shoes.  I am still trying to let go of that hurt and anger.  I felt steamrolled.  I was told that my young age made it difficult for me to make this decision, that this is not what I pictured life would be when I married.  We needed the procedure, all the doctors in the practice had discussed the case and the decision was unanimous.  They needed to know what condition the baby had because if it was fatal they would not do a C-section so as to give me a better chance in future pregnancies.  I wish I had my wits about me that day because I would have spoken an earful.

I was so insulted to be told that my age and my dreams were causing me to make a uninformed decision.  I knew that I would face this challenge head on and accept the "for better or for worse" that I had pledged to my husband and future family.  I knew in my heart that this procedure was not right for me or my child.  I realized that I was not meant to think about future pregnancies, only this one, this child God had given me at this very moment.  If a C-section meant that I could see that child, hold him, even if for just a moment, even as he took his last breaths, I was willing to give up my desire for more children.  Unfortunately, even though there was not a concrete reason, that doctor did not support my decision.  It hurt deeply to open my heart, expose my emotions, expecting to be heard and accepted and to be told I was making the wrong decision.  I wanted to save my already vulnerable baby from a vulnerable procedure.

To this day I still do not know why the procedure was forced on me.  I got a second opinion (a doctor that did want me to get the test but said I could wait until much closer to term in case it did induce labor), spoke to a geneticist and a pediatric cardiac surgeon and learned, for a fact, that a pre-term diagnosis would not make a difference.  What was going on genetically wouldn't change and the cardiac team already had pictures from a fetal echo in case an immediately post-birth surgery was necessary.  I did not go back to my old obstetrician and actually skipped a month or more when I should have gone to appointments.  I finally worked up the courage to find a new practice and ended up with a group of high-risk doctors based out of Fairfax Hospital.  I don't know why, but no one ever asked me for an amniocentesis there.

You probably know the rest of the story.  Our beautiful boy was born via C-section (after all the amnio talk he decided to be breech!), a "pink tet" (baby with heart condition tetralogy of fallot without the common blue-tinged skin), eight pounds, 11 ounces.  James.  He was our James.  We thanked God for a healthy delivery.  After all the months of worry we were able to hold him.  I remember laying in bed that summer before he was born, holding my stomach, hoping James could feel the love I was sending him.  I desired to hold him close, save him from the medical and emotional turmoil we experienced.  Finally, I had my chance.  It took hours of me pleading before the nurses allowed me in the NICU.  After reading similar stories from other families, I wonder if they wanted to keep me away until genetic testing was confirmed.  How terrible.  Why should we know a diagnosis before knowing our son?  That should not cloud our first meeting with him, our first look, our first touch.  I wanted to experience James, not to be clouded by the loom of an extra chromosome.  I praise God we did not see the geneticist until the following day.  Whatever she had to say, our James was perfect and always would be.

Even though he was healthy, we had an uphill battle getting out of the hospital.  Cardiology wanted James to gain weight more rapidly so he would be on track for surgery.  That lead to a feeding tube through the nose (NG tube) which eventually led to reflux and a refusal to eat.  James came home on an NG tube a month after his birth (what a joyous day!) and ended up back in the hospital two weeks later with a severe nasal infection (the NG tube didn't help that situation).  Recovery led to a stomach tube which ripped through the stomach wall within days of surgery (the night before our discharge) which led to another emergency surgery.  A month after admittance we were home.  A couple months later James had a wildly successful open heart surgery and has only had a few, short hospital stays since.  Mark and I have had a huge learning curve to keep on top of James' medications, surgeries, therapies, anatomy, and all the other things in between.  It has been a challenge, but an exciting challenge, to keep up with our brave son.  Times do get tough, but James' beautiful smile and sweet little hands always get us through.

I hope that other families can find solace in our story.  It is ok to deny genetic testing.  Unfortunately, doctors need to "cover their backs" and often drop the ball when it comes to supporting a very emotional decision.  Do not feel pressured to do something if you feel it is not right for you.  Get a second opinion, a third, a fourth.  Learn all you can so you can make informed decisions.  Your sanity and emotional security, as well as your child's safety, are worth it.  And, most importantly, find support!  Ask family and friends to stand behind you, to keep you going, especially when you have to stand up to the medical professionals.  Find a Down Syndrome Association near you that can offer a kind ear or shoulder to cry on.  Those parents have gone through what you are experiencing.  And they made it through as better people.  Learn from them, accept everything they have to offer.

Please don't feel that I am bashing genetic testing.  It can be a necessary part of a diagnosis and treatment.  Modern medicine can bring about miracles.  And doctors can make all the difference (I am sure my old obstetrician has done great things too).  We were blessed with outstanding pediatricians during James' hospital stays and are eternally grateful for their support.  But be willing to challenge.  Your child with Down Syndrome will be your best teacher. He or she will challenge the world to see the beauty in everyone; will challenge physical barriers to prove he can do whatever he desires with your help and patience; will challenge you to find joy in even the most painful of hospital stays; will challenge you to love unconditionally.  These beautiful children can give more than most people without an extra chromosome because they give everything with love and determination.  We are lucky to have them.  I thank God that He closed the door to a normal birth, a "normal life."  My son couldn't be more wonderful and I couldn't be luckier to learn from him.  As I was learning to cope with the changes in our life a wonderful nurse technician on our peds wing showed me the following poem:

Welcome To Holland

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.

 ~Emily Perl Kingsley


A door slammed shut with that horrible phone call from the doctor, the door to "normal parenthood."  But God opened a window for us, a window to Holland.  Surprising, yes, but we are enjoying the view this window gives us of Holland's "Rembrandt."


With love.

First family photo.

Our little Rembrandt at 1 month.  Isn't he perfect?!