Parenthood. Life. Down syndrome. Faith.

My life changed a lot when I found out my 3rd child would be born with Down syndrome. But then again, it really hasn't changed so much.

We're still living life, trusting God, raising our kids, and loving having a baby in the house.



Wednesday, May 29, 2013

Raising a baby with Down syndrome

One question that I am often asked, and that I asked others when I was pregnant: "Is it different having a baby with Down syndrome?  Is it harder?"

Before I answer this question, it's important to note that the list of medical issues that a baby with Down syndrome can have is pretty long.  Lots of issues are common with our babies and many babies with Ds have multiple diagnoses, from heart defects to bowel problems to failed hearing tests to difficulty breastfeeding.

Cade only has a minor heart defect.  

So for us, having a baby with Down syndrome is just like having a typical baby.  Day-to-day, Cade is just like our other two.  Starting to hold his head up, starting to smile, starting to bat at toys hanging above him.  He nurses well, he poops just fine, and when he needs something he doesn't hesitate to let us know.

Where Cade differs from Camille and Colby is the amount of extra care and services we've gotten.  The first 3 weeks after his birth were FULL of appointments.  Regular well-checks, echocardiograms (for the hole in his heart), lactation consultants.  We have a home health nurse who comes to our house once a month to help us with feeding; we don't need the help now, but when he starts solids she'll likely be out every two weeks.  We have an occupational therapist who comes every 3 weeks to help us work on Cade holding his head up and doing mouth massages to shape his palate properly to prepare for solid foods.  She will also bump up to every 2 weeks once he starts solid foods.

Cade receives SSI and WIC, based some on our income but mostly on his Ds.  I gladly accept whatever help we are offered to make sure he's healthy and that we can provide whatever he needs. 

If Cade had other medical issues, then caring for him would undoubtedly be harder.  But it would be the medical issues that made it harder, not the Down syndrome, if that makes sense.  We are very thankful that Cade is healthy.

Colby hanging out with Cade

Saturday, May 25, 2013

What does Down syndrome look like?

Down syndrome can be a terrifying diagnosis.  We got our diagnosis at 23 weeks during my pregnancy.  We were scared, brokenhearted, and I had no idea what our lives would look like once he arrived.  Well, he's here and I can show you what our lives are like...


 
 
  

When you see it this way, Down syndrome isn't so scary.  God may give us more than we think we can handle, but He only gives it to us one day at a time.  

Thursday, May 23, 2013

Cade's birth

originally posted on Facebook, April 6, 2013

Cade's birth was a bit more dramatic than Camille's or Colby's.  Of course, everything about the pregnancy was more dramatic, too! 

Since Cade has Down syndrome, and babies with Down syndrome have a higher risk of stillbirth, our doctors recommended that we have him a tad early, around 39 weeks.  We scheduled a repeat c-section for Tuesday, April 2.  However, if I were to go into labor, then we all agreed that I would attempt a vaginal birth.  I tried with Colby but failed when he got stuck.  Despite all the complications in the pregnancy, my OB and specialists agreed that a vaginal birth was safe to try. 

My mom was able to fly out for 2 weeks so she'd be here to care for Camille and Colby, plus help after the birth.  I was really nervous that Cade would arrive too early, especially since I had some pre-labor symptoms around 32 weeks.  Thankfully things settled down the closer we got to the delivery date.

Friday, March 29, I went in for my final prenatal checkup.  My OB was excited about the birth and we laughed about what would happen if I went into labor over the weekend.  She told me that she was on call all day Saturday starting at 7 am.  Later that same day, Mom arrived, around 1:30 pm.  We went for Mexican for dinner and joked that with Colby, I'd gone into labor after eating Mexican. 

Sure enough, at about 3:30 am on Saturday, I was awake when I felt a mild contraction and then my water broke.  That had never happened before and I lay there for a bit wondering if it really happened.  I went to change clothes and let Shannon know that I thought my water broke.  We both showered, finished packing the hospital bag, then woke Grandma with "It's time!" 

Since Mom had just barely arrived, we hadn't had any time to show her where things were, how to use Colby's cloth diapers, Camille's schedule for school, etc.  We gave her a quick run down, then left for the hospital. 

We arrived at the hospital around 5:30 am and they took me up to triage.  The contractions had kicked in and were coming about every 2 minutes.  Once we got into a labor & delivery room, the contractions were really getting intense.  Much more intense than they were with Colby.  I'd wanted a drug-free birth but it was quickly clear that that wasn't going to happen.  I was only 2 cm dilated and the contractions were almost on top of one another with little rest between.  They put in an IV and gave me some Fentanyl to take the edge off the pain.  That did help a bit and I was able to breathe through the contractions. 

At 7 am, my OB walked in.  I was so thrilled to see her!  I was progressing nicely and was around 3 cm.  I'd also gone ahead and asked for an epidural.  Begged, actually.  I was out of my mind with the pain.  They told me it was so intense because my water had broken already...there was no barrier to dull the contractions.  Most of my time in labor & delivery is a blur.  Once I got the epidural, I was able to rest a little bit.  I could still feel the contractions, but they weren't horrible.  My OB went on rounds, but she told me later that she stopped at every nurses station to check on me via computer. 

Through the morning, I continued to progress perfectly.  When I was dilated to 6, the contractions overwhelmed the epidural and I started feeling the need to push, even though it was too early.  They gave me some more meds but I'd maxed out the epidural.  At this point, I was going to have to "grin and bear" it.  However, Cade didn't give me the chance. 

They call this point in labor "transition" as you go from regular contractions to delivery contractions.  Cade did not handle transition well.  I didn't know it at the time, but his heartrate dropped dangerously.  My OB came in and immediately they started moving the monitors around on my belly, trying to find a better heartrate.  When this didn't produce the results she wanted, they put an internal monitor into the birth canal, right next to him so they'd get a more accurate picture of what was going on.  This didn't produce the results either, so in case the monitor was defective they tried another one.  At this point, she told us that he had 60 seconds to bring up his heartrate and then she was calling it. 

Sixty seconds later, the room flooded with nurses.  I don't remember this part very well, other than agreeing to the c-section and signing some paper with a squiggly line.  I was still reeling from contractions that were less than a minute apart.  Shannon says every nurse had a specific job and each one was on a phone saying "Go!  We're coming NOW to the OR."  Soon I was rolling down the hallway, the lights above flashing by like they do in the movies.  They gave me meds to stop the contractions and take the pressure off the baby.  We were rushed into the OR and things happened very quickly.  I heard a nurse warn my OB that the baby had been off the monitor for 8 minutes.  She answered "I know, I'm almost there." 

Just a couple of minutes later, Cade was born and I heard his cry.  The sweetest sound ever!  They told me later that his heart rate went from 140 (normal) all the way down to 70.  The nurse called it an emergency c-section.  It was a blessing that I'd had an epidural already because that was the only reason I was awake for the birth.  Had I gone drug-free as I'd wanted, I would have been asleep for the surgery.  But during the surgery, Shannon and I were fairly unaware of the severity of the situation. 

Once Cade was out, they brought him to see me, then took him next door (with Shannon) to be evaluated by NICU nurses who were standing by.  They were assessing his immediate condition with the heart defects and any possible unforeseen issues.  Thankfully, Cade was doing great and before long, they brought him back to me.

In my previous births (both cesarean) the babies were brought to me all swaddled like burritos.  Shannon held them while I tried to see their faces.  This time, they brought Cade naked and barely wiped off.  They lifted my gown and laid him skin-to-skin on my chest.  This is called kangaroo care and is really beneficial for babies, but usually it's only allowed for moms who have a regular birth.  Never did I dream that I'd have the opportunity for kangaroo care with a c-section.  The whole time they finished my surgery (about 45 minutes) Cade laid on my chest.  Then for 2 more hours during recovery.  He nursed with a little help from a nurse and fell asleep.  And finally into our Mom & Baby room...he stayed naked on my chest all day long.  When my Mom brought Camille and Colby to visit for the first time, we wrapped Cade in a blanket and they cuddled him close.  It was about 8 hours before he even had a diaper on. 

So in the end, Cade Owen was born at 10:43 am Saturday morning, just 7 hours after my water broke. He weighed 7 lbs 3 oz and was 20 inches long.


 

   

The beginning

originally posted on I Love Cloth Diapers blog, January 18, 2013

"All children are beautiful when they are loved." 
~Bertha Holt

This is perhaps the most difficult post I've ever written, not because I'm sad or broken, but because I know this isn't what you're expecting.  Usually our blog posts are about diapers, or maybe parenting, or a fun giveaway.  This isn't that post.  

In late July, we found out to our utter shock that we were expecting baby #3.  Why was I so shocked?  First, because I'm the ultimate planner.  Nothing happens without me planning every last detail.  Second, it took 3 years to conceive our son Colby.  We had medical interventions, lots of tests, months of temping and taking ovulation tests.  I honestly never thought that we'd get pregnant without these interventions.  But despite all of that, here we were.  

  

It took me a long time to get used to being pregnant again.  It didn't help that I was sick for 18 weeks.  Just as I was feeling better, I had some routine blood tests.  A few days later my doctor called.  

"Your tests show a high risk for Down syndrome.  We want to do an ultrasound and some more testing."  

Normal risk for any pregnancy is 1:700.  Normal risk for a 36 year old woman is about 1:300.  My risk after this blood test was 1:28.

No problem, those tests are never accurate anyway.  We scheduled a Level II ultrasound with a specialist and were excited to find out the gender of our little bundle.  

But not so fast.  During the ultrasound they found 2 markers for Down syndrome.  Our risk was now a life-altering 1:3.  

We held it together in the doctor's office.  Afterwards we went for a quiet dinner before picking up our kids.  Neither of us ate much and I fought tears for most of the dinner.  Down syndrome?  Really?  That night I lay awake long into the wee hours, pleading with God to make our baby be okay.  Just make him healthy, I begged.  

We went back to the specialist for a blood test called Maternit21.  It's a new test that can determine with 99% accuracy whether or not a baby has Down syndrome.  For most women, this is a perfect alternative to an amniocentesis.  After the blood draw, the wait began.  

We had Thanksgiving, where we bravely went ahead with my plans to do a gender reveal pumpkin pie.  I cried as I made the cheesecake with a hidden blue layer and solemn as I later cut it in front of my husband's entire family.


Then we all had the stomach flu.  It was miserable but took my mind off the wait.  Finally, 2 weeks after the blood draw, the genetics counselor called.  

"The test is positive for Trisomy 21.  Your baby has Down syndrome."

I would like to say I took the news stoically.  I did not.  I cried and cried.  My husband was home at the time, but missed hearing the phone call.  He came out to where I had been working in the garage and asked a question about something work-related.  But one look at me stopped him mid-sentence.  He got down on his knees and hugged me tight.  We stayed that way for several minutes.  Eventually he said something about it being okay, that we'd be okay.  That the baby was perfect the way he was.  That we'd love him just as we love our other two.  

The next days are a little blurry in my mind.  We met again with the genetics counselor, who politely offered to tell us about our options for termination (90% of mothers carrying a child with Down syndrome choose to terminate) or adoption (over 200 families are currently on a waiting list to adopt babies with Down syndrome).  We met with our regular OB and with our new specialist OB.  We scheduled an echocardiogram to look at our baby's heart (up to 60% of babies with Down syndrome have heart defects).  We stumbled through those first 2 weeks after diagnosis.  I read a lot on Ds, I joined the local support group, we secretly Googled pictures of babies with Ds when we thought no one else was looking.  

And gradually, it was okay.  We told our families, we started telling our friends, and the more we talked about Down syndrome, the more okay it was.  



I'm now 29 weeks pregnant.  The echocardiogram and a follow-up ultrasound have both shown that, so far, our baby is perfectly healthy (just as I'd begged for from God).  

If I go into labor on my own, I'll attempt a vbac.  If I don't go into labor, then on April 2 (39w2d) we will have a repeat c-section.  Both of my previous births have been cesarean, due to a variety of issues.

And the best part?  We're excited--THRILLED--to be having this baby.  I can't wait for him to be here.  Yes, there will surely be challenges, but there are challenges with every baby.  (Our son Colby cried for 4 months straight no matter what we did...oh, that was hard.)  And no matter what, this baby, Down syndrome and all, is a blessing. 


 
Resources:
http://www.efdsn.org/ 

originally posted on I Love Cloth Diapers blog, January 18, 2013