Thursday, April 28, 2011

Uncomfortable Patience

Our cardiologist brought Lenay's case to conference with his group this week, and the doctors were unanimous.

They are all uncomfortable with the narrowing in her heart.

But they all believe that patience will provide the desired outcome.  Her little heart just needs to grow.

Okay, so that's good.  Everyone is on the same page.

But wait, there's more.

The doctor who performed Lenay's surgery is attending a national conference next week.  This is a conference at which all of the top experts in the field from all around the country will be at.  And when I say experts, I don't just mean in pediatric cardiology. 

I mean these are the top experts in the specific field of surgical procedures to correct problems like Lenay's. 

And she will be presenting Lenay's case to these experts.

Is it just me, or is this God's perfect timing?

Thursday, April 21, 2011

Cardiology and Multiple Therapies

Campbell saw the cardiologist last week too. 

He can still hear her murmur slightly, which is due to her pulmonary valve stenosis.  Its a preemie thing, and we've known about it since she was a wee little one.  She is working on outgrowing it.  Go Cam.

She came off her cardiac medicine in December, and since then her event recorder, holter monitor, and EKGs have looked "fantastic" according to our doc.  No more arrhythmias for her!

He did say that there is a chance that her arrhythmia could come back down the road.  He said sometimes it reoccurs around 10-12 years old.  Not a big deal, just something to watch out for.  By that time, she would be able to feel it, and would be able to tell us something is going on.  Cardiology will continue to follow her too, which is good for our peace of mind.

She bought herself a pass for the next 8 months!  Good job Miss Campbell.  :)

She also saw her physical therapist and speech path that same morning (it was an exhausting day) and everyone thinks she is doing great!  She has made tremendous strides in the last few months.  Only thing our PT mentioned was that she is showing slight pronation and may need more supportive shoes, but we will just wait and see.  He said that pronation is common in babies with low tone, and also in babies who are learning how to walk.  She is both of those things, so he will watch her and see how those little feet do in the next few months.

We saw her occupational therapist today (try and keep all these therapists straight, okay?) and she also thinks that Campbell is doing great.  Last time she was seen 4 months ago, she wasn't feeding herself or holding a cup.  During her evaluation today, she was showing off her oh so efficient pincer grasp, drinking from her cup, turning pages in a book, putting together a puzzle, and some other quite impressive things.  Our OT said she is at about 15-16 months for fine motor (she is 20 months old, 17 months adjusted) so she is still delayed, but closing the gap. 

I'm so proud of her.  :)

And she has taken her first steps.

That's right.  Campbell is walking!

Last summer when Lenay was on the brink of walking, and Campbell was only just barely rolling, let alone doing anything else, I was concerned. 

More than concerned. 

Scared.  Scared she wouldn't ever walk.

And as you know, she hated eating.  She had terrible GERD and a learned behavior to refuse food.  She had poor weight gain and even lost weight. 

And here we are a year later.  And after the developmental screening process, qualifying for early intervention services, a year of PT, OT, and feeding therapy, I have a baby who walks and feeds herself.

I have a baby who walks!

And feeds herself!


The things that many other parents take for granted.

We are so blessed.

Monday, April 11, 2011

Waiting on A Little Heart

Lenay's heart is not better. 

But its not worse.

I'm so grateful that its not worse!

She had her sedated echocardiogram today and our doctor was able to get some very good pictures of her heart.  The best pictures yet actually.  It might have had something to do with the fact that she was "drunk" as the nurses so affectionately described her.  :)  Eric stayed in with her while Campbell and I went to therapy, and by the time I got back she was still sobering up, bobbing and weaving, and laughing randomly.  :) 

Her blood pressure is elevated, which is to be expected, given that the occlusial device that closed her PDA is sticking up just far enough into her pulmonary artery to cause a greater pressure gradient.  And her heart appears "thick" but no thicker than it looked 4 months ago.

So where do we go from here. 

We have 3 options:

1) They can do an angioplasty of sorts.  Go in through the groin, expand a balloon in her heart to try and make more room in the artery.

2) Do a more invasive surgery where they would go in, remove the device (which has been in place for over a year and her heart has grown around) and reclose the PDA with a clip instead.  Our beloved doctor referred to this as "tricky" - not a word I like to hear my doctor say about my daughter's heart surgery!

3) Wait and see.

Our doctor is very thorough, and he values his collegues' opinions.  He will bring her case to their conference next week and see what they think.  He has already talked with the surgeon who performed her original surgery, as well as Texas Children's Hospital (they are world renowned for pediatric cardiology) and so far the consensus is to play the waiting game.

I'm okay with that.  Once again, God is teaching me patience through these children.  It's not one of my strong suits, and He knows that.  He is teaching.  We are all learning. 

Learning while we all wait for a little heart to grow bigger.

Tuesday, April 5, 2011

What's Your Sign?

When Noah was a baby, I read a book called Baby Signs.  It changed the way I thought about communicating with my baby boy, so I gave to both of the Grandmas to read as well, so we could all be on the same page with Noah.  It made such a difference in our lives that I have since bought a copy of this book for each expectant mom I know :)

Baby signs have been around forever (hello...ever seen a baby wave bye-bye?) but only in recent years has this form of communication been brought to light and really gotten the attention it deserves.  Its so simple.  Yet so impactful.

No, signs are not just for hearing impaired babies, as I have to explain to many strangers who ask me after observing my communication with the babies.

And no, baby signs do not delay a baby's speech development, as I have also had to explain to many a stranger.

It actually helps babies to speak sooner than they would otherwise.


Because once a baby realizes that she can communicate her needs via baby signs, literally thousands of neurons begin firing in her brain.  Much sooner than if she was waiting until she could actually speak the words she wants to say.  The earlier these neurons fire, the sooner those parts of her brain develop.

And its not just beneficial from the anatomical brain aspect.

Its also beneficial from the keeping-your-sanity aspect. :) 

It eliminates so much frustration between parents and babies!  When a baby can tell you she wants a cracker, or a drink of milk, or that she is hurt, you can immediately meet her need instead of guessing what on earth she is crying about. 

Both of my twins use baby signs, but I will use Campbell for an example.  When she signs banana to me, and I say, "Campbell do you want a banana?" her face breaks into a huge grin and I can tell she is just so proud of herself for communicating that need with her mama.  She is so excited to tell me not only what she needs, but also about what is going on around her.  When Leia walks by, she signs "doggie."  If we are looking out the window, she signs "outside" and "bird" if we see one.  She signs "eat" when she is hungry, and "bath" whenever she gets bored because that is her absolute favorite thing to do. 

They both sign many more words as well, and we are adding more every day.  I've even seen them sign to each other, which is adorable of course.  I've yet to be quick enough to capture it on video, but I'll keep trying.  :)

Thank you baby signs.  You've made such a difference in the lives of all three of my children.  And mine too :)