Wednesday, July 27, 2011

When Your Mama's a Big Baby

Today was a hard one for me.

At Cora's last pediatrician appointment they gave us an order for a blood draw to do a thyroid panel.  Because the visit had already been long we postponed, thinking I could take Cora in on another day.  And I've been avoiding that too.

But we knew that it had to happen, so I marked today as the day.  And boy was I scared.

The last time Cora had a blood draw was during her pre-op appointment right before open heart surgery.  And of all the things that have happened since she was born, that experience stands out as one of the very hardest for me.  It took 45 minutes and many sticks to try for veins in her wrists, arms, scalp and feet.  They needed several vials for all the different pre-op tests and after 45 minutes of holding down my absolutely hysterical baby, who had barely ever really even cried before that point, it was all I could do to hold myself together.  If it weren't for all the pressure, stress and fear leading up to her surgery I am sure I would have fallen apart during or after.  But with all the momentum leading up to her surgery I couldn't let myself fall apart and I didn't shed all that many tears then.

But somehow today, while on the freeway on my way to the lab at the hospital, those tears started to fall.  I was so worried that it would be a repeat of that visit.  They told me that the low tone associated with Down syndrome can extend even to her veins, so a vein that would otherwise be taut and easy to find just bends with the pressure of the needle.  Of course, she was also only 11 weeks old and in heart failure at the time.  So I was hoping that with better health, a strong heart, a few months and several pounds on her it wouldn't be so hard.

And it wasn't.  Amazingly, it took only 1 stick and about 1 minute.  She cried, of course, but calmed down pretty quickly once it was over and went back to being her smiley little self for the rest of the day.

I breathed some sighs of relief.  Seriously, I know a blood draw is something so minor.  That after watching her go through open heart surgery it shouldn't phase me.  But the most painful moments stand out so clearly:  when we rushed her to the ER at just 24 hours old and watched a room full of doctors and technicians hover over her while she repeatedly turned blue; when I looked into her eyes and helped hold her down for her blood draw; when I watched her thrash around with vacant eyes just after waking up after surgery; and when I held her while they cleaned and re-dressed her central line.  Those were the hardest moments.  When I had to be there and watch her and just pray for her suffering to ease and for it all to be alright.  Handing her off for surgery somehow wasn't the worst moment.  Because at that moment I knew she was in the hands of a higher power.  And honestly, probably because I wasn't going to watch.  At that moment I just had to trust and have faith that she would be OK because the alternative was inconceivable.

So today, after all this, I definitely feel relief.  But the pain of those first months of fear has been rubbed raw again too.  All through the day, when I think of it, I get a little teary eyed.  And thank goodness little Cora has been such a little lovey girl today, making me laugh with her beautiful smiles and snuggling up in my arms for some extra special lingering cuddles.

I guess it was my day to be a baby.  And that's probably the completely wrong word to use.  Because God knows that my baby is way tougher than I am.

Her remarkably small, minor little battle wound. 

And just for the cute of it...

Monday, July 25, 2011

Solid Foods... No Problem!

Cora finally had her first taste of solid food yesterday.  And it was oh so much fun.  Organic acorn squash, roasted, pureed and strained, and thinned with water.  Then hungrily sucked down by my new little solid food eater, who opened her mouth for each bite, getting oh so excited as the spoon neared her mouth.

And as I watched her, getting more excited myself as her meal progressed I felt a kind of elation and a little bit of relief too.  Her pediatrician told us that her tongue thrusting, which has increased quite a bit in the past few weeks, may mean that she's not quite ready for solids, since she'd likely just push the food out.  But since it seems unrealistic that the tongue thrusting will spontaneously resolve any time soon it had left me wondering where we'd be with eating.

I know I've mentioned that I had some reservations about starting her with solids at 6 months, part of me wanting to exclusively breastfeed for longer.  But I agreed that giving her practice with texture and eating would be a positive thing.

I also realized that I have been somewhat worried about this step for the last several months.  With children there are so many potential things to worry about.  And with Down syndrome you get an extra list of common challenges that you hope don't materialize.  When we were struggling with her ability to eat early on (pre-heart surgery) I read about kids who have trouble ever going back to eating by mouth.  I know that's a rare situation, but even so, it is nice to breathe a small sigh of relief that it's one less thing to linger at the back of my mind.

Even though, yes she did push the food out with her tongue, she still managed to eat the whole serving.  Expressing her excitement with an almost constant monologue, she wowed us yet again with her ability to learn new things, to grow and develop.

Aye, aye, my baby's growing up.

Sunday, July 24, 2011

Cora's First Camping Trip

This weekend we took Cora on her first camping trip.  Since the Pacific Northwest weather hasn't been gracing us with much of a summer lately, with the first nice forecast in what has felt like weeks, we decided to do something fun with Cora.  Ignoring our mile long to-do list and easy excuses, we decided to do a quickie almost-no-preparation one-night camping trip.  So Saturday morning we packed up a few things, hopped in the car and drove out to the Mt. Hood National Forest to find a lake for swimming and a nice place to camp.

Luckily, in this part of the world, finding a beautiful place isn't very difficult. 

Cora enjoyed sitting by the lake under the umbrella.

Even though the temperature never rose high enough to make swimming mandatory, she had fun dipping her toes in the water, and then plopped down at the shoreline intrigued by the rocks under the water. 

We picnicked on nibbles reminiscent of our honeymoon two years ago (great bread, good cheese, olives, salami, raspberry cider and some good Northwest microbrews) while Cora enjoyed a leisurely nursing and a Cora-esque 5 minute nap.  Cora in the Baby Bjorn, we hiked along the lake shore under the beautiful trees.

We returned to the campsite to set up camp, enjoy some wonderful chili, and watch Cora become mesmerized by another fire.  The three of us snuggled into the tent for warmth and had a good sleep.

Then this morning Cora entertained us with her antics, as she squirmed and shimmied, talked and smiled.

We'll leave you with a taste of Cora telling Nick all about how much she loved her first camping trip.

I think we'll have to do this again very soon.

Monday, July 18, 2011

Adventures in Feeding, Then and Now

Now that Miss Cora is 6 months old, I realize that her life is divided in half for me.  The first three months before open heart surgery, and the last three months since.

Like I've said before, it really is night and day.  While we were waiting for surgery, it really did feel that the waiting and the fear would go on forever.  It seemed impossible that it would be behind us.  And now it almost seems like an imaginary time.  The struggles she faced before surgery now seem so distant.

But even though it seems like ancient history already, it has definitely colored my feelings about our life today.  I think that I really appreciate our day-to-day more than I may have otherwise. 

Anyway...  I got to thinking about feeding Cora again today.  The first post I wrote in this blog was about feeding her.  Because for the first 12 weeks, feeding Cora was the focus of my life: the horribly stressful, difficult, all-consuming focus of our lives.

Many other parents of children with Down syndrome can attest to this, and probably others as well, but feeding a baby with Ds, especially one with a heart defect, is very different from feeding a typical baby.  Imagine a baby that seems to have no sense that she is hungry, that doesn't wake up to be fed, or show any hunger cues, that doesn't open her mouth to eat, and that almost never takes her "quota".  For a typical full-term baby you may never even know that there is a quota.  But when the NICU doctor gives you a feeding schedule with intake requirements just to take your baby home and sends you to specialists at the Feeding Clinic it's a different story.  Especially when you know that the baby has to gain weight to have a surgery that she will die without.  Trying to feed your baby becomes quite a stressful event.

I remember hearing advice about how to know when your baby has eaten enough, and thinking that there was no way to apply that to Cora.  That Cora would starve if we left it up to her.    And she very likely would have.  I never imagined that things would really change.

And then, when we were working on breastfeeding and actually started her on breastfeeding after surgery, I was overjoyed but was still so worried and stressed.  How to translate all we'd been doing to breastfeeding, especially when it was so hard to keep track of it all?

All the information I received advised me to feed per demand rather than feed on a schedule.  But how would that work with a baby that didn't seem to know she was hungry?

Amazingly, it has worked out.  True, at first she did breastfeed on a schedule, but eventually she started to let me know she was hungry at different times, often more frequently than I would have otherwise fed her.  Gradually I increased the number of hours I would let her sleep at night between feeds and still she continued to gain weight.  We kept up a bottle or two a day of fortified breast milk for a few weeks, and we were able to let that go as well.  I gradually reduced my pumping as my milk supply reduced and evened out.

And now, our girlie is fed on demand (although I usually know how long it's been since she's eaten and will offer her food after a period of time).  She has learned to let me know she is hungry and I've learned to trust that I can read her cues.  She eats a lot during the day and then goes about 10 hours at night before waking up to be fed.  She hasn't taken a bottle in at least a month.  I even stopped pumping over a week ago.  And still she gains weight.  Our little Superstar!

And the best part?  Feeding her is no longer a stressful event.  I no longer feel fear in my stomach when it's time to eat.  I don't spend evenings crying because I can barely do the most basic mother's job of feeding my infant.  Now feeding is a fun time to cuddle, snuggle, and love.  And eat.   She finds it comforting too, which is natural, but is such a change. It is one of my favorite recurring parts of the day and I am in no hurry to wean her any time soon.

This adventure is so much more fun.

Look at brand new Cora Bean learning how to eat!  Wow!

Sunday, July 17, 2011

Holy Moly 6 Months Old!

The last week has felt like a bit of a whirlwind.  Cora and I spent a couple days in Auburn visiting my sister and little Kai before they headed out of town again.  And I started work again.  I am fortunate that right now working is very part-time and at home.  But even so, it's been a transition I've been anxious about, and it'll be interesting to see how it pans out and how I am able to organize my time with Cora.

Little Beanie Girl has gone through some big changes this week.  Of course, we celebrated her 6 month day on Wednesday with fun at Grandma's house.

And somehow, it was that day that she started to "make strange" as my mom puts it.  Stranger anxiety, even with non-strangers.  Because only 9 days after seeing my mom and sister, Cora got pretty upset when held by them.  Out popped Lippy with tears to follow.  Back to me and all was fine.  Funnily, she still loved her Grandpa.  When he got home she was all smiles and love for him.  Go figure.

Last night we went to a birthday party and Cora was in full stranger anxiety mode.  The evening ended with Cora in a  full screaming meltdown and us sneaking out a side door to head home.  Not very Cora-like behavior, I would have thought, but maybe this new 6-month version we have has a few new quirks.

Cora showing her Lippy to Grammie

Time with the family was otherwise fun.  She still enjoyed time with Cousin Kai, as always and warmed up to everyone else by the next morning.

It's so hard to believe how big she's getting.  13 pounds, 4 ounces this week.  23 inches long.  15 inches head circumference.  What a big and beautiful girl.  Big by our standards anyway.

But still small enough to snuggle up in my arms.  Small enough to cuddle into me in the early morning after her first nursing.  Small enough to carry around (mostly) comfortably for long hours.

I've been finding myself getting nervous for the time when she won't be small enough for these things.  So I try to linger a little longer in these moments.  To hold her a little closer, stroke her head a little longer when she looks up at me with those baby blues and tells me what she's thinking.  To engage her, and play with her, and cuddle her up throughout the day.  To enjoy this time when she's still almost a part of me... close to me always, needing me to survive.

I guess I feel like I need her to survive too.  What a lucky pair of girls we are.

Sunday, July 10, 2011

Sipping Away. Oh my, she's growing up!

 A few weeks ago we asked our Early Intervention therapists about straw cups.  I have learned that sippy cups are not a good idea for kids with Ds.  Straw cups, on the other hand, help to increase oral motor skills and avoid bad habits.  The therapists told us we could start her on a straw cup anytime.  Although that seemed a little early to me, Nick has been pretty excited about it.

So after talking about it for awhile, we finally got one yesterday.  I assumed that Cora would need quite a bit of practice and talked to Nick about not expecting her to "get it" right away.  We helped her explore the cup for a few minutes, when lo and behold! she started sucking.  Success!  And a little coughing and sputtering!

She's tried it a few times since and already seems to be a pro!  Perhaps this doesn't sound like such a big deal to other parents out there, but I feel like I've got a little superstar on my hands.  Not quite 6 months and using a straw cup in less than a day.  Wow.

I started reading about straw cups since yesterday and it seems that she's using it a little earlier than is most often recommended.  Especially since she hasn't started solids yet.

And that is another somewhat touchy subject for me.  She has her 6 month check with the pediatrician next week and we'll be discussing starting solids.  Nick is really excited for that.  We're shopping for a high chair right now.  And I've already got my first homemade veggie puree planned for her:  acorn squash.

But I'm nervous.  Part of me wants to drag out exclusive breastfeeding for as long as possible.  I know there are pros and cons of starting solids.  I know that starting will give her exposure to new textures and flavors and probably help build her oral motor skills.  But I feel like breastfeeding is still the best thing to help her with that.  And I will definitely continue to breastfeed as her primary nourishment.  But I'm nervous nonetheless.  I guess I just want to keep her my little breastfeeding baby for as long as I can.

But Daddy's pretty excited about it.  And I think Cora will be too.  She has been pretty interested in our food lately, having a good time watching us eat.  She's not sitting unassisted yet, but I don't think that will deter her much if we give her good support.

So we will see.  In the meantime, it's fun to see our big little girl sipping on her very own straw.

So proud.

This video is a little long... but shows her first attempt with the cup.  She is already more efficient.

Wednesday, July 6, 2011

Home Again

Well we're back home. And our week-long trip went by oh so fast.

Scrolling through the camera I discovered that I didn't take many photos, despite the fact that I wanted to capture Cora with all her new and old buddies. I guess that means I must have had fun.

Little Beanie girl had quite a good time too, little social butterfly that she is. With a couple brief exceptions, she was happy to be passed around to many different laps, sharing her smiles and squishy little love with all who wanted to play. She snuggled up with grandparents, cousins, aunts and uncles of the first, great and great-great variety, and slept, ate, got a little sun (despite the shade and mineral sunscreen), and had a ball.

She even enjoyed her first Fourth of July, complete with an impressive fireworks display in Spokane. I am sad that I didn't take pictures of her watching them in awe, content to be cuddled with her ear protection on.

Now we are back home, and even with all the laundry, grocery shopping and cooking to be done today, I must admit that I had fun having her all to myself for the day.

Of course, now she's in the bedroom giggling with her dad. I could really die from the cuteness sometimes.