Happy Birthday, Silas!

Today is Silas' first birthday!
 I cannot believe he is already a year old!!! As much drama as we've had this year, I thought surely this year would drag by.  Not so.  It has flown by.

The first time we laid our eyes on baby Silas.  Who wouldn't fall in love immediately?!

Isabella meeting Silas for the first time.

Silas' first Christmas.  He was 11 days old.

It's hard to believe that a year ago today, we were going about our daily business--school, dentist appointments, etc.  Little did we know that 20 miles away a little boy was born that day and it would still be another week before we even knew he existed.  He spent his first week in the NICU because of breathing difficulties, and we brought him home straight from the NICU. It was a whirlwind once we found out about him, and brought him home just one day later.

Christmas 2011

Silas' first month was full of all kinds of concerns.  He was obviously having difficulty breathing.  He sounded like a barking seal when he breathed, and he was having noticeable apnea at night.  He couldn't keep any food down and wasn't gaining any weight.  We were going for weekly weight checks and ultrasounds and tests trying to figure out what was wrong.

 Everything came to a halt, though, when I took him in to the pediatrician for another weight check and to discuss the results of his ultrasound.  He was gray and his oxygen level was at 50%.  They called an ambulance to take him to the hospital and that was followed by 8 days in the hospital and his first operation on his airway.  His airway was almost 100% blocked because of severe laryngomalacia.  That was when we discovered he had previously undiscovered congenital heart defect and significant pulmonary hypertension.  He spent his first month birthday in the hospital.

At the ER

His second ambulance ride--going to Children's hospital.

After his first surgery, in the PICU.

His next few months were full of specialist appointments--trying to figure out a course of action for his heart and airway defects.  He was on oxygen full time until he was 3 months old and wore oxygen whenever he slept until he was 7 months old.

Silas makes even oxygen look cute! :)

On oxygen

About 1 month old, on oxygen

Silas had his first sleep study done when he was 5 months old and it was discovered that he had extremely severe obstructive sleep apnea and even with wearing oxygen, his O2 levels were dropping very low while he slept. Afterall, that oxygen does no good if you won't breathe!  It was determined that he needed another surgery on his airways. So on his 5 month birthday, he was wheeled into the OR once again.  Miraculously, he only needed one night in the ICU after that surgery and was doing so well the next day that they discharged him!

Not feeling so well after his 2nd surgery

Sleep study--not much fun!

Another sleep study when he was 7 months old determined that he was much better off sleeping on his belly because his poor muscle tone was allowing his tongue to fall back into his throat and cut off his air supply.  On his belly, his tongue falls out of his mouth and he can breathe freely.  That change, combined with the dramatic improvement to his breathing from his surgeries, allowed us to finally get rid of the oxygen tanks in August.  Yay! We were so excited.  (But I will say, having a child on home oxygen is definitely a pain, but it is quite doable once you get used to it.)

Happy and healthy, around 5 or 6 months old

Getting an EKG done--he gets one every few months

We have also discovered that his ASD continues to close on its own.  So what was once considered to be a significant heart defect is now being classified by his cardiologist as a mild defect.  We praise the Lord for healing his little heart without surgical intervention!!  With a healing heart, adequate oxygen levels, proper nourishment (we discovered that he is severely allergic to milk and soy), fixed airways, and good sleep, he is now thriving.  His second 6 months have been a night and day difference from his first sickly 6 months.

Silas is now a happy and alert baby.  He loves to watch people--to the point of craning his neck to follow you.  He has struggled with eating off of a spoon because of tongue thrust, but he is a champ at eating finger foods.  He is learning to drink out of a sippy cup.

Silas is crawling and pulling up on objects (as long as there is something he can easily grab onto.)  I don't think he is anywhere near walking yet, but that is okay with me.  He's already a mess just crawling.

He is doing sign language and adds a new sign or two each week.  And his new game is to play "put it in, take it out."

Holding his own bottle

Standing up to play with toys

We are so thrilled at how well Silas is doing right now.  We think back to his first 6 months and we also think about all the other babies with Down syndrome who really struggle even for their very lives because of a lot more severe defects.  So we don't take anything for granted.  We pray that he will continue to thrive in life and stay healthy.

Beautiful little boy with an amazing personality!

Christmas 2012

So, this first birthday is so meaningful to us! We have been so blessed to be chosen to be Silas' parents.  I always wanted a child with Down syndrome, and God gave Silas to us.  He is such a gift and we are thankful every day--for the trials and the triumphs.  And I must say that I am so thankful to Silas' wonderful birth family for allowing us to be his parents.  Happy birthday to our little miracle!

For fun, here's a month by month run down of Silas' development and growth:

One month old

Two months old

Three months old

Four months old

Five months old

Six months old

Seven months old, apparently starting his underwear modeling career

Eight months old

Nine months old

Ten months old

Eleven months old

Not quite his birthday, but close!  He is about 18.5 pounds now and wears size 9-12 month clothing. He is currently cutting three teeth, which puts the total number of teeth at 7.