December 27, 2011

Reid's Story

We always knew we wanted three kids.  After we had Spencer and Briggs life got a little busy and we decided a gap between number two and three would be great! I knew I wanted our last baby to be born in the fall (got to spread those birthdays out!).  So, we planned accordingly and baby was on the way!  As soon as we found out we were pregnant, we were ecstatic!  I tried to enjoy every little moment, knowing this was my last pregnancy.  Everything went smoothly, no diabetes, screening all normal, 18 week ultrasound...It's a BOY!!!  I went in for a routine ultrasound at 31 weeks and it changed our lives forever!  The ultrasound tech did the scan.  Still, everything seemed fine.  She said, "Okay you are going to see the doctor now."  I said, "Okay, great! So, everything looks great with the baby today?"  She said, "Well, his femur bone is measuring a little shorter."  She asked us to wait while she got the doctor to come see the scan.  We were completely shocked and tried not to panic.  Our doctor came in and viewed the scan while the ultrasound tech pointed out his femur, fingers, head, and heart.  She didn't seem to panic and told us we would talk in a minute.  I remember my first reaction while waiting for her to come talk to us was "dwarfism".  Isn't that strange?  When the doctor came in she started talking about down syndrome.  She said that a shorter femur measurement can sometimes be a sign of downs.  She also mentioned that the tech couldn't see three joints in his pinkie finger (also an indicator of down syndrome).  Now what?  We were scheduled for a level 2 ultrasound.  Dwarfism left my mind and downs entered.  I had to wait about a week before our appointment for the level 2.  Finally, the day came and we were on our way to the appointment.  My parents were with us for support.  The tech began the scan and I could see the measurements were coming up short again.  The tech left and went for the doctor.  The doctor entered and viewed the scans with the tech.  Then, the news that changed everything.  He simply said, "It looks like some form of skeletal dysplasia."  I didn't even know what that was or what it meant for our precious baby boy.  The next few moments became very scary as I tried to understand what he was saying.  He mentioned things like wheelchairs, six inch limbs as an adult, and death.  He explained that some forms of skeletal dysplasia are fatal after birth because the rib cage is smaller and doesn't allow the baby's lungs to expand properly.    He mentioned that the baby appeared to have cloverleaf skull.  It seemed very slight but he still said he could see it.  I remember at first, while he was talking, I felt like I was in a fog.  I didn't cry, I didn't scream.  Then, I turned to look back at the monitor.  There, on the monitor, was MY baby's face!  The same little face I had been seeing through scans during the pregnancy.  I LOST IT!!  It became very real, very fast.  The doctor left the room to give us a few moments.  My husband, and parents, and I all consoled each other the best we could.  I truly felt like my life had ended right then and there.  The doctor came back and thankfully my dad was able to pull it together to ask a few questions.  My dad asked if he could write down the names of these dysplasias so we could do some research at home.  The doctor said he would but .......get this.......stay away from personal blogs because they may give false hope!!!  False hope?!!!  Shouldn't I have hope right now?!!  What else is there?! Ugh.......I could probably write a book about this particular doctor but that isn't what is important.  We made the long car ride home and went to pick my oldest boys up from a friend's house.  We drove up in the front yard and there they were playing baseball.  I broke into tears again, thinking about wheelchairs and severe deformities.  I was thinking that my precious baby boy would see his brothers do all sorts of things he would never be able to do himself.  We came home and without one tear, delivered the news to the boys that our baby would be different.  Our strength during the conversation was was all God!  You can imagine what followed.  There were plenty of tears that night and early into the morning.  My husband became physically sick.  The next day I went straight to the computer and typed in skeletal dysplasia.  Dwarfism appeared.  Dwarfism?  The doctor didn't say dwarfism!  He painted a completely different picture.  I clicked on "images" and scrolled through a few.  The cutest little boy's face appeared and I clicked on it.  It was a personal blog.  What did I do? I went to a personal blog that the doctor said stay away from because of false hope.  I read all about this precious boy and how well he was doing.  I saw pictures of him and his family.  They looked so happy!  It gave me just what I needed......hope.  I mentioned this particular little boy and his mom's blog in a previous post.  I can't say enough wonderful things about it.  How Life Is Measured saved me.  It brought me back to life.  I was put on bed rest for the remainder of the pregnancy because of polyhydramnios(extra amniotic fluid).  All this extra time led to me reading on the internet.  Sometimes the reading would shake me to the core.  Remember the doctor mention cloverleaf skull?  Well everytime I researched cloverleaf skull with skeletal dysplasia, fatal versions would come up.  I would then have to pray and go back to my "medication" (personal blogs of happy families) to get through.  My amazing daddy would come and sit with me some during the day.  I think those visits may have helped us both.  Now the waiting game.  We had a c-section scheduled.  The baby's head measured too large to deliver.  I went into labor three days before the scheduled date.  My husband and I were so nervous and so anxious to finally see our baby boy and know his and our fate.     
People always say they would do anything for their children.  That was exactly my thoughts and feelings.  I had been praying for God to please let me make a sacrifice instead of my baby.  I would do ANYTHING for my children.  I lay there praying and hoping he would be fine.  It seemed like forever before we heard his cries.  Enter Reid Allum Chmielewski!!!

October 25, 2011 at 6:13 a.m. Reid was born screaming and crying!  Rico and I broke into tears because we knew if he could cry, he could breath!  If he was breathing, he would LIVE!! Reid was 8 pounds 12 ounces.  We were so relieved he was here and we could finally concentrate on what was really going on with him instead of the "what ifs".  Reid spent a week in the intensive nursery.  He had many, many test run.  First and foremost, his head was fine! No cloverleaf skull!  His thyroid test was a little abnormal and needed further testing.  His white count was up and he needed an antibiotic.  He had an IV for the antibiotic and fluids.  He also had a feeding tube until he got the bottle technique down.                                                                                         

The most critical part was breathing. He would have, what the hospital staff referred to as, "dusky" spells. This is when his oxygen levels would dip down below a certain range. I was very nervous when it came time to bring him home. His pediatrician thought he would be fine because he had gone so many hours without any "dusky" episodes. So, we brought our last baby boy home!  
Reid has achondroplasia.  Achondroplasia is the most common form of dwarfism.  Reid will be short, but he will do all those things I worried he couldn't do.  Rico and I plan to raise him just like Spencer and Briggs.  He is now two months old and doing great!  We took him to see some specialist at Johns Hopkins in Baltimore.  I was relieved to find that the only issue he is having right now is torticollis, which I was told, has nothing to do with achondroplasia.  Torticollis causes his neck muscles to be very stiff and we have to do stretching exercises to correct it.  Because of the torticollis, Reid has been turning his head to the right to sleep.  Everyone knows how babies' heads are...too much in one position has caused some plagiocephaly (flattening) on that side.  Right now he has a foam pillow that is custom to fit his head.  It prevents him from turning his head to the side he prefers.  The flattening is very slight.  However, if I don't see improvement, I'll be looking into a band (helmet) to correct it. 

Rico and I know that raising Reid will be different than what we expected.  However, I know God will never give us more than we can handle.  I feel that we have been given our precious Reid because He knows we can handle it and I suspect our Reid will teach us a few things along the way as well.  I feel very honored to be raising all of these boys.  I always believed that God gives us these children on loan.  They are His babies and we just get them for this short time on earth. 


  1. Jennifer this post is so beautiful! I seriously have tears in my eyes! I am so glad you are going to John Hopkins! They have amazing experts there! The orthopedic surgeon (which Reid will be seeing as he gets a little older) is a Little Person! There is also a woman by the name of Dee Miller who works there and she can help with any questions you may have! She is also a Little Person. John Hopkins was the first place I contacted to learn about Achondroplasia. They were so wonderful! After this, I contacted the LPA my local chapter. They have been AMAZING!!!! I suggest you get involved with your local chapter. I live on Long Island. Where are you guys from? I take Lyla to Delaware (Dupont Children's Hosptal). This is where all the LP's in NY go. We travel 2 times a year to see Lyla's specialists.

    Do not worry one bit about Reid! He is going to be PERFECT!!!! And your other two sons are going to love their baby brother so much! Just think that because of Reid your sons will never judge ANYBODY by what's on the outside but by what's on the inside. HOW FABULOUS IS THAT!!!!! This adventure you are about to begin is going to be the Best journey ever!!!!! I promise!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
    Please contact me at any time DAY or NIGHT!!! I mean it!!! You are not ALONE and never will be!!!!!

  2. Your blog is just beautiful! Thank you for sharing Reid's story. It reminded me so much of my son Seamus' story. The picture painted for us was bleak, and now he is a shining light in our lives! Welcome to the LP "family," we are so glad to have you here! Looking forward to seeing Reid bloom and grow! (Our blog is

  3. Hi Jennifer ~ nice to "meet" you.
    I have a son, Caden, who is 4. He also was born with Achondroplasia. However, as crazy as it seems we didnt get his diagnosis until he was 14 months old. Which after reading your story, I am relieved I didn't have to go through the fear you did the last part of your pregnancy :o( That must have been so scary!

    Welcome to our LP Family! I look forward to following you and your adorable boys!!!


  4. Hello!

    My son is just a bit older than yours. He is 5 months Sunday! He also has achondroplasia. Our stories are eerily similar. I went in for a routine growth check at 32 weeks because of thyroid disease and my doctor acted JUST like yours. Told me he didn't know if Sam would survive, mentioned all kinds of terrible things.

    Thankfully, I had an appointment with a genetic counselor and had another ultrasound reviewed by someone much more familiar with skeletal dysplasias. They diagnosed my son with achondroplasia, although we wouldn't be sure until he was born.

    It took three months to get a diagnosis due to some problems with lab work.

    I wish there was something that could be done to educate doctors on skeletal dysplasias so that no one else has to go through what we went through!

  5. Oh and my son also has torticollis, but his flattening is in the high moderate range. He will more than likely need a band/helmet at six months. His torticollis is so SO much better now though.

  6. I'm pretty sure I read this blog post shortly after Declan was born. We didn't find out until right after his birth, but all of the amazing personal blogs out there are definitely good 'medication' for us mamas! I loved reading this again now. Thanks for sharing! And happy birthday to Reid! :)