When Your Baby is Sick

Cora and I have spent the past several days quarantined from the outside world, tucked away on an air mattress on the living room floor in our jammies, growing weary of Signing Time (on my part, at least) and having some marathon nursing sessions.

It's a nasty cold/flu.  Cora hasn't eaten more than a few bites a day, and her little arm rolls are starting to shrink.  My own appetite unfortunately hasn't suffered, although the rest of my symptoms are like mirrors of hers.  Even our temperatures are identical today.

I took her to the doctor on Saturday morning, concerned that she still seemed to be getting worse 5 days into it.  I knew it wasn't anything really serious, but it's hard sometimes to keep the worries away when it's your baby.

So far we've been lucky with her strong immune system.  But the health scares we have had have been life-threatening.  And even when your analytical mind knows that things aren't heading in that direction at the moment, it's hard for your heart not to go there... hard to keep that fear completely at bay.

Daddy can still elicit those smiles...

 

 

I imagine that all parents have felt that fear at one time at least.  A high fever, a surgery, a rush to the Emergency Room, an accident, or even a more insipid nightmare like cancer.... these are the things we all fear deep inside.  And they are things that too many families have to face.

We've been following the story of a beautiful little girl a couple months younger than Cora who is fighting for her life in the hospital as I type.  Literally thousands of people are watching and praying for this sweet baby, hoping together that her life can be spared.  Another friend had a scare after her toddler took a fall last week, resulting in seizures and an ambulance ride, although thankfully her daughter is okay.

These things happen too suddenly.  Too easily for anyone's comfort. 

We try to push away the images of our own babies in their places, but there are moments when those fears seem like possibilities, when even the biggest love doesn't seem like enough to keep out the monsters.

A couple of days ago Cora asked me to read On the Night You Were Born.  By the end, I was sobbing.  My sweet girl looked up at me with concerned questioning eyes, and jumped into my arms for an embrace, arms glued around my neck and patting my back as I cried.

This kind of love feels unreal sometimes.  This biggest, most intense love feels impossible to sever... yet at the same time it can feel so precarious.

And so I hold tight to my coughing, sneezing, weak little girl.  She is safe for now, here in my arms. How I wish I could keep her that way.

A Case of the Sillies

Is there anything better than the sound of a toddler laughing?  Perhaps said toddler laughing at her Daddy...

Cora enjoyed Saturday morning playing with Nick while I slept in after a much needed night out with some girlfriends. 

I awoke to some serious belly laughing, and then got up to find that two of my favorites little silly-folk had captured their morning with the camera.

So on this Monday morning, in lieu of my own over-thinking, anxious and cyclical thoughts, I offer you my favorite little Bean and her Daddy Bean.  A case of the sillies, indeed.

Cute Has a Way of Shining Through

A couple of weeks ago we had a fun opportunity for a Valentine's Day photo shoot with Megan at Owl's Eye Photography.  We had a session with Megan when Miss Cora was 9 months old, just days after she learned how to sit up independently.  What a pretty little baldy girl she was.

We've actually been waiting for warmer weather to schedule our next session, since the Portland rainy season stole our opportunities last fall.  And then Megan held a giveaway for a mini-session.  I entered, with a feeling that our name would be drawn.

And lo and behold.... we won!

The shoot was brief with Cora happy for only about 5 minutes of the whole thing, and crying the rest.  But cute sure has a way of shining through.

Here are my favorites.  Thank you, Megan, for the beautiful photos of my favorite girl!

 

 

Congenital Heart Defect Awareness Week

Before Cora was born, heart defects were not something I thought much about.  A few years ago, a friend's new baby had open heart surgery with success, but it still felt like something that hadn't touched me personally.  All that changed when we were told that the reason our one day old baby was turning blue was because she had a serious heart defect that would require open heart surgery between 2 and 4 months of age.

Cora had a complete atrioventricular canal defect, which is one of the most common heart defects in babies with Down syndrome.

Research shows that without surgery, only 4% of children with complete AVSD (or complete AV canal defects) survive beyond 5 years.  In Cora's case, I sincerely doubt she would have survived to four months old.  She was in serious heart failure at the time of her surgery at 11-1/2 weeks old.

Of all the blessings in my life, I am most grateful for Cora's successful heart surgery.  Without surgery she would have had no chance at a life. 

Congenital heart defects are the most common types of birth defects.  Almost 40,000 babies are born with CHDs in the United States each year.  For children with Down syndrome, the incidence is much higher than the typical population.  Current information shows that approximately 40-60% of babies with Down syndrome have a heart defect.  About 35% of these children have AV canal defects like Cora.  Some of the more minor defects will repair themselves without surgery, but many require surgery.

Knowing that your tiny baby will have open heart surgery is something that no one wishes for their family.  In fact, many decisions to terminate pregnancies with a prenatal diagnosis of Down syndrome are due to the presence of a heart defect.  But as I have learned, the prognosis for children with Ds and a heart defect is very good.  Most defects can be successfully repaired surgically or resolve on their own in time.  Although stressful and painful, a diagnosis of Down syndrome and a heart defect is not as dire as it once was.

Since Cora was born, I have been in touch with so many other families whose children have undergone open heart surgery.  Some of them feel almost like family.  Many of their stories helped me as I prepared for Cora's surgery, and they inspired me to do the same for other families down the road.  I began to compile a list of blogs, stories and advice written by other parents of children with Down syndrome who have had surgery.  I only hope that our story and the stories of other families like ours can continue to help others who will go through this experience in the future.

If you would like to share your family's story about Down syndrome and open heart surgery or congenital heart defects on this blog, I would be honored to post it here.

Having a Baby to Benefit my Child with Down Syndrome?

The past few days I have been obsessing over the question of whether to try for another baby.  Stressing and obsessing, having dreams about taking pregnancy tests and going into labor.

I just don't know if I want to have another child.

While planning for children, I always said I wanted two, so my kids would have a sibling. My sisters are my closest friends and the sibling relationship is so important to me.  Yet, in the back of my mind I was thinking.... "Well, maybe one would be enough for me."

After Cora was born I thought that of course we'd want another child.  Everything I heard and read discussed how beneficial it can be for a child with developmental delays to have a sibling. 

We originally discussed starting to try when Cora turned two years old.  I mean, if we do have another child I don't want them to be too far apart, and I am not getting any younger.  Well, Cora just turned two.  And after searching myself up and down for the past few weeks, I think the only conclusion I can come to is that I'm just not ready.

There are so many reasons I don't feel ready.  Most of those reasons can be waved away by parents who've been there and for whom it's turned out just fine.  She's not sleeping well and never has.  We are exhausted.  She is still quite dependent on nursing and I don't want her to rush to wean.  She is so, so attached to me.  I love the one-on-one time I have with her, helping build her interactive and social skills and taking her to activities on a whim. I love having the freedom to just focus on her.

I know that having a second child could be a great thing for her.  I see photos of other children with their siblings and then I start waffling again.

But what if it's not a great thing for her?  What if we have another child with even more significant needs than Cora has had?  What if we have a child that doesn't interact with her or who interacts negatively?  Perhaps that's not likely, but it could still happen.  What if we choose to have another child solely for Cora's benefit and it doesn't end up benefiting her?

There is always a lot of talk on the Down syndrome boards about having another child after the birth of a child with Down syndrome.  For some it's whether and for others it's when.  Many fear having another child with Ds.  Some want the opportunity to have a typically-developing child or to help eclipse some of the pain surrounding their child's birth.  Many more want to provide their child with a sibling.    I can understand all these things.  Part of me would like the experience of parenting a typical child.  Part of me wants to have a baby at home and not have to send her off to the NICU and watch her have open heart surgery.  And part of me would even like to have another child with Ds.

In my heart, I think I would be sad if Cora never had a sibling, regardless of Down syndrome and whether it will be good for her social, cognitive and physical development. 

But I don't think that having another baby just for Cora is a good enough reason.  It's something that my husband and I need to want for ourselves and for the whole family.

So for now I'm putting it on the back burner.  I hope that in time I will know what I really want.  I don't expect all my doubts and concerns to disappear, but if we do decide to have another child, I want it to be because it's what we all want.

How to Know?

Parents of young children with Ds these days are likely to hear just how much better the opportunities, expectations, and quality of life are for their children, as opposed to even 10 or 20 years ago.

This is attributed to better medical care, Early Intervention services, and largely, in my view, to inclusion.

Being counted in as a member of society is critical.  Being a student in a classroom with other typically-developing peers, participating in community events, being seen and heard... all these factors help to raise expectations for our children.  And our children are rising to meet many of these expectations all the time.

But like other parents, I often find myself wondering just how much to push and just how much to expect.  There is such a push to prepare for school, to make sure our children are in age-appropriate typical classroom settings.

I am starting to look at preschools.  I know she won't start for another year, but it suddenly feels like it'll be here before we know it.  Her Early Intervention team feels that she won't benefit much from the school district's special education preschool and that we should start looking for a typical preschool classroom for her.  The daunting prospect of putting her in school is already giving me butterflies in my stomach.

And the whole thing has gotten me thinking...

I'm looking at taking her back to the library story time events, since her naps are finally shifting enough to permit this.  And I wonder if I should take her to the 2-year old class or the 1 year-old class.  She just turned 2.  She's small.  She doesn't really talk.  She doesn't walk.  Heck, the last time we were in the 1-year old class (about a year ago), she was one of the very few non-walkers and the 1 year olds were doing some pretty impressive things (like following instructions and participating in activities.) Thinking of what the expectations for the big 2-year olds makes me nervous.  Would she be ready?

I guess the question I've been asking myself is whether I want to constantly push her beyond where she is developmentally and expect her to be with her same-age peers.

If we push her so much will there be room for her to be where she is?   

I want to value where she is now.  My perfect moments now are when I am on the floor with Cora, delighting in the things that she finds hilarious, watching her interact with her surroundings, seeing the sparkle in her eye as she discovers something new.  Sometimes I find myself losing sight of that beauty when I am too focused on her next steps.  I want to give us both time to enjoy where she is now, happy to move forward when she is ready.

If I am constantly looking to push her, does that mean that I am not accepting of where she is?  Does that mean that I don't think that where she is is good enough?  

Not long ago while playing with blocks she'd toss them around, maybe halfheartedly trying to stack one or two before knocking them over.  And I would wonder whether I should push her harder, knowing that one day soon she will be measured by her whether she can stack blocks.

But today I watched her meticulously try to stack her blocks for almost half an hour.  For the first time, she really tried.  She hasn't mastered the interlocking pieces quite yet, so she just tried balancing them on top of one another.  And then the little smartie tried some problem solving: she pushed them over to the couch so her tower could lean against it, allowing her to stack a little higher.  I looked on with such pride.  I felt such accomplishment for her, even though she hadn't quite mastered the skill.  And I realized that I really just needed to wait for her to be ready.

I don't know what it is that makes her ready.  Somehow turning 2 has been a bit of a turning point for her.  She is eating more, nursing less, self-feeding with utensils more easily, and suddenly willing to drink from a cup.  She finally seems interested in moving her body.  These steps that I have been worriedly waiting for her to take are now happening before my eyes.  I don't know why she is now ready for them, but she is.

So I will keep questioning myself I'm sure, hoping that I can make good choices.  I'll keep watching her, keep playing with her, and keep providing her opportunities to learn.  I will try to step back and let her try, even though I want to scoop her up and make everything easier.  I will continue to work on being patient, waiting for her to show me what makes her shine.