Knightly’s Birth Story and Learning His Diagnosis of Down Syndrome

POP goes my water

The past few months had been crazy, not only with work, but with the serious nesting phase that kicked in as we excitedly prepared for our baby.

What color palette should we use for the nursery?  Was the house babyproof?  Which crib?  Glider or no glider?  Did we get everything on the list?  Do we really need them?  We literally moved 2/3 of our house around to “be ready”.

As a way of relaxing, we decided to start watching a new show and, well, got kind of hooked.  It wasn’t just any TV show.  It was this one:

It was 4AM and we were on the LAST season, LAST episode, slumped over on the couch, eyes barely open when we decided to call it a night.

David was out as soon as he hit the bed.

Me?  I was going over my baby to-do list, envisioning what an awesome future we had in store, and thinking, “Wouldn’t it be funny if my water broke just now?”

*POP*

I actually HEARD my water break.  I froze because this couldn’t have possibly happened.  I still had 3 weeks left!?  The house, the nursery, even the car seat in the car wasn’t ready yet!

Then, the water really started to gush.

I shook David and said, “Honey, my water broke!”  He JUMPED out of bed and, together, we panicked our way to the hospital.

this is it! don’t get scared now.

In a dream-like state, we rushed over to Labor & Delivery.

“Yup!  You’re in labor,” said Nurse #1 out of dozens the next few days.

Gown.  IV.  Heart monitor.  Contraction checker thing.  And just like that…there was no turning back.  It was time to push that baby out of me.

Calls were made to family.  Family started pouring in.  David announced it on Facebook. It was official…but still felt so unreal.

Officially checked in at 5:15AM, we dilated a few cm within 4 hours.  To get things going, we started walking around the hospital (which pushed me another 3 cm in less than 2 hours).

I had heard horror stories of long, long labors so we came prepared with books, puzzles, and, yes, even Lord of the Rings on DVD (Extended Edition in case my labor was extra long).

But time flew by faster than expected (it also helps when you have free wifi and an iPad).

So what did the contractions feel like?

For me, I felt it more on my lower back.  So imagine you ate something REALLY awful and you’ve got to run to the restroom.  But you can’t…because there is none…and you have to hold it for HOURS…and your back is giving you wave after wave of pain every few minutes.

It’s something like that.

Between contractions as it got more painful, we became more and more giddy to see the baby.

As family started pouring in, we all came together and prayed and prayed for a smooth delivery and that God would let our baby boy be healthy.

After 8 hours of labor, I couldn’t take it anymore.  Despite David and our mothers being so wonderful in helping make me comfortable and doing the relaxation massages (INVALUABLE by the way – do your lamaze class!), it wasn’t just the pain that was overwhelming – it was the exhaustion.  Remember, we had NO sleep at this point and I was quickly realizing we’d have very little sleep once this boy was out.

I wanted to see how long I could last without any medication.  6 cm later, I figured – eh, I’ve done enough. EPIDURAL PLEASE!

The epidural process was kind of frightening for me.  One, the contractions were coming on strong and I wasn’t allowed to move even if I had one during the 15 minutes it would take to inject the drugs.  Two, I HATE needles.  The anesthesiologist tried his best to distract me by asking questions about the two of us.  NOPE!  I knew what he was up to and was very distracted at the idea of something going into my spine.

Yes, I felt it.  The anesthesia helped but I started feeling it a little when the epidural came in.  It didn’t hurt so much as it FREAKED me out so I automatically yelled, “I feel it!  I feel it!”  To which, the anesthesiologist added more of that delightful anesthesia and, after squeezing David’s hands as tightly and painfully as I could from each contraction, it was done!

3 hours of BLISSFUL sleep later, I woke up so relaxed, smiling the day away.  I felt no pain whatsoever.

The doctor ordered a Pitocin drop as my contractions were getting farther apart and labor was taking longer due to the epidural.

One hour later: “It’s time to push!,” said Nurse #…I don’t know – let’s say 7.

5 different medical workers (nurses, midwives galore) rolled in a massive cart covered in blue medical towels with God knows what instruments were underneath. Thank God they hid it…I did not want to know what was about to be done.

I was strapped in.

I couldn’t feel any contraction but I could feel my legs, which was odd.  It was more exhausting than anything to push, lift your head, count to 10, not being allowed to breathe while you push. I remember David holding my hand tightly, looking at me with such determination and focus as he tried to encourage me to push.

6 pushes later, I heard loud exclamations and even David saying, “We can see the baby’s head!  He’s almost here!”  The baby was already crowning.  I could almost hold him.  Then…

“Hold on!  The doctor’s busy with another delivery and we don’t want the baby to come ’til she’s here.  Let’s just have you sit tight ’til she gets here.” – Nurse #9

You’ve got to be kidding me.  Then proceeded a strange next 15-20 minutes as I lay there with the baby partially crowning attempting not to do anything while we waited for the doctor.

When that door opened, we cheered.  5 pushes later, it finally happened.

I heard everyone scream (in delight, not horror).

…No words can describe the moment you first see your baby.  It was the most powerful, emotional moment.  I was a wreck.  I was on cloud nine.  When I saw him, I couldn’t believe he was mine.

I also couldn’t believe how disgusting it all looked, him in purple with gunk and a conehead.  David and I agreed he was the ugliest most beautiful thing we had ever seen.

I remembered being hesitant before about holding my baby before he was all cleaned up.  I’m glad I decided to still let them bring him to me. I couldn’t believe this was our baby.  I couldn’t believe this was the one kicking around in my belly since 12 weeks, the one who’d react and touch me back when I rubbed my belly to talk to him.

This baby was a piece of David and my heart combined.

I couldn’t stop the tears.  It was probably the most embarrassingly loud obnoxious crying I had in my adult life.

When I looked over, David was sobbing as well. I heard the click click click of his camera as he shot every moment, globs of tears streaming down his face.

As I held the baby and as David held the two of us, I couldn’t stop thanking God – thanking Him for my family.

recovering after delivery

Everything else was a blur when I held our child in my arms.  Thank God for that (and for the epidural), as I learned later, I had torn and gotten second degree lacerations.  The doctor (and team) spent a good 30 minutes stitching me up.  I lost so much blood I went anemic and passed out in the following hour, which poor David witnessed in horror as he held the baby and frantically imagined the worst.

A few smelling salts later, I was VERY groggily wheeled over to our recovery room where the baby and I conked out as David, the protective daddy, watched over us and updated family and friends on our status.

suspicions of Down Syndrome

From 3AM in the morning, we received visitors every hour – nurses, midwives, doctors, specialists.  It was actually quite exhausting to not be able to sleep straight (which was probably good practice for having the baby anyway).

Despite the lack of sleep, we spent most of our awake time loving and memorizing every feature of our perfect baby boy.

Then, 6 medical workers later, one doctor pulled up a chair and sat down in front of us.

“The nurses are concerned that your baby may be showing signs for Down Syndrome.”

We were in complete shock.  No one in our family has ever had Down Syndrome (DS).  People have asked us if we ever did any genetic testing or screening while pregnant.  We honestly think of that as an odd question to ask as, whether we did or not, it wouldn’t have changed our decision to have the baby at all.  But we hadn’t done any tests.  Too many people we’ve known had taken them and gotten false positives and endured 9 months of a stressful worrisome pregnancy.  We had decided early on, this baby (as all babies are) was a gift and whatever the baby was born with, we would love him and everything would be okay.

But the moment we heard the possible news…that was a lot easier said than done.

The doctor told us the DS features he showed were also prevalent in Asian babies so it may not be a need for concern but she ordered a chromosomal test just to be safe.

As she left the room, David and I were frozen as we held and stared at our little boy, looking for any signs that he could have DS.  We saw none.

So when one of our nurses stopped for her next visit, we asked her what made them suspicious.

She then walked over to the baby, picked him up, and proceeded to pinpoint and touch every feature on his body that she said resembled DS.  As she pointed at every feature, I felt my heart break with each remark.  Everything I had been memorizing, every part of him I had loved – felt like she was saying was flawed.  When she left the room, I couldn’t stop crying.

So David told me to take a nap.

When I awoke, I witnessed the second most powerful memory for me since having the baby.

I looked over at the window and saw David holding our baby.  It was early morning still and the curtains were closed but the sunlight streamed into the room and over David and the baby.

“Drex, I think our baby has Down Syndrome…Why? Why would he have this?  God, please not our baby boy.  Please give it to me, put it all on me, not to our baby boy.”

When I looked closer, I could see David was sobbing.  Uncontrollably.

I hadn’t seen David cry like that before.  As I lay in the hospital bed feeling helpless, I cried.  Despite having what seemed in all other respects a perfectly healthy baby, there we were, two parents broken from news of just the suspicion of Down Syndrome. The day quickly went from full of joy to full of utter desperation.

Despite the happy moments and visits we received the following weeks, I couldn’t help but pray over and over again, “God, please. Don’t let it be true. Don’t let it be true.”

fighting jaundice

In the daze (and wiping away the tears as new hospital staff came in), we quickly received news that our baby also had high levels of jaundice.  Before we knew it, he was placed in phototherapy, which was one of the most frustrating experiences of being at the hospital.

He had to be placed in bililights 24/7, with only being allowed to have 15 minutes at a time out of the therapy in order to feed.  His skin got so dry under the lights that he would scratch and bleed, even the hospital bands started to scratch and cause him to bleed.  He held those scars for weeks.

They also put a VERY poorly-made mask that was meant to protect his eyes.  But because of how uncomfortable the mask was for him, he would push it away leaving his eyes exposed or covering his mouth/nose disabling him from breathing.  From that point on, we got very little sleep as one of us had to stay awake to make sure his mask stayed on every few minutes.

As his jaundice levels increased, they required he drink formula, despite having latched on and having breastfed so well the past day.  We had to scrap that progress and have him on the bottle, with occasional nursing, ’til he was rid of the jaundice.

His jaundice rose to nearly neurologically damaging levels over the next week; and, after 9 days of frustration, hard work, very little sleep, and to close calls of needing to visit the ER (due to my low blood and his jaundice), we praised God that the jaundice level finally FINALLY went down to where it was safe.

It felt so good to just be able to hold him again. And after a harrowing first few days in the hospital, it felt good to be able to go home.

on receiving the diagnosis

When we were home, we proceeded to tell close family of the doctor’s suspicions of DS.  All of us wouldn’t believe it was true (and we had many family members working in medicine who were adamant that they saw no signs of DS).  To us, he had to be perfect.

One week later, we received a phone call.

“Hello, this is the genetics counseling office.  We’d like to set up an appointment to talk to you about your son next week.”

A geneticist?  That wasn’t a good sign.

As soon as I played the message, my heart stopped but the tears wouldn’t.  I knew this was it.

David frantically searched the internet for all the different reasons the geneticist may have wanted to meet with us.  Maybe it was just to tell us everything would be okay?  Maybe nothing was wrong with him?

But to wait a WHOLE week?

Thankfully, we had the baby’s 2 week check up with his pediatrician the next day.  When we reached his office, he asked if we had gotten an appointment with the geneticist.  We had told him what had happened.

We froze as we waited for his response.  He sat us down and said:

“Your son has Down Syndrome.”

We nodded our head in understanding.  It was what we needed to hear…but never wanted to.  I broke down in front of the doctor.  Now it was all real.  There was something wrong with our perfect baby.  We had Googled all the different potential diseases, complications of Down Syndrome and all of it seemed so frightening.

“We’re going to need to schedule a series of tests and specialists as kids with Down Syndrome tend to have heart problems, thyroid issues, hearing problems…[and he went on and on].”

As he saw me unfold, he tried to cheer us up and told us that our son was healthy up to this point and had surprisingly strong tone and everything seemed good.  The tests were just a precaution.

Over the next several weeks, we slowly told family and close friends as we processed and rode such an emotional roller coaster.  We were both trying to learn how to raise a baby, how to raise a DS baby, and what we can do to best help our son grow.  We fought sleep deprivation, each other, God, pride, fear of others rejecting our baby and all our ideas of what a “perfect child” should be.

Suddenly, perfect color palettes, the age he’d start reading, how he’d win over the ladies wasn’t what occupied our thoughts, what we were hoping for.

Was his heart okay?

Will he be able to hear?

Will he ever be able to have a normal life?  Fall in love?  Have children?  Live longer than us?

We had never prayed so hard.  Had never felt so tested by God.  We were on our knees – praying, weeping.

Helpless.

today

Our son is almost 7 weeks old and, to us, he is still our perfect baby boy.

We’ve ridden through, and are sure to continue to ride the emotional roller coaster, of what this new world of special needs means for him.  We’ve been reading books and have since gotten connected with the Regional Center, DSAOC, and have begun attending weekly therapies for him at Laguna Beach.

It’s going to be a long road ahead as we are uncertain as to how mild or severe the DS will be, or of what complications will arise.

But we’ve learned to let go of what a perfect child is, what a normal child is.

Any child (normal or “special”) can get any disease, any complication, any situation that we can worry about.  But we cannot be consumed with worry for the future.

What we know now is this: he is a gift.  He is healthy.  He can hear.  He can eat.  He is of a very healthy weight, height and strength.  For now, he’s shown no slowness in his development…and he is so greatly loved by our dear family and friends.

Our baby has taught us (and keeps reminding us) to celebrate every step of the way, to find joy in the smallest things, and to stop running this race of perfection that even we can fall into as parents.

Our baby has brought our family together, he has brought David and I closer together.  In so many ways, he has been an answer to prayer.

So we are so excited to introduce to you the newest member of our DPARK family, our precious baby boy:

 Knightly

born July 25 – exactly 7 lbs, 19″

behind the scenes video

to knightly

To our little Knight in shining armor,

We can’t be prouder or more grateful to be parents to such a wonderful, handsome boy like you.  God made you and knew you before you were in mommy’s belly.  You are so very special and He has so much in store for you.

Thank you for coming into our lives, changing us, challenging us, and teaching us what love and life are all about.

We love you so much.  God loves you so much.  You are, and always will be, a treasure from heaven – our little Knight in shining armor.

 

to those who’ve been by our side

Thank you for your patience, for all your love, for your listening ears.

Thank you for the food, for your prayers.  Thank you for your tears.

We could never explain how much it has meant to us, how much we’ve needed all that encouragement and support.  It’s literally been God’s way of helping us get through each trial, through each day.

Thank you.  We could not express how grateful we are for people like you.