Sunday, May 22, 2011

The Team

Campbell has had a busy few weeks.  Its a good thing she has me to run her around to all her appointments!

We saw her physical therapist.  He was very impressed with her walking, of course.  :)  He says she is roughly at about 12-15 months for her gross motor skills.  (She is 21 months old, 18 months adjusted.)  We will only continue to adjust or correct her age until her 2nd birthday, which will be coming up here before too long.  He also recommended that she get orthotics for her tiny pronated feet.  Her low tone contributes to the fact that her ankle bones are rolling down, so these orthotic inserts will help to keep her feet in a neutral position.  Daddy went out and bought her a new pair of shoes for the occasion (We've actually never bought shoes for the girls before!  We've been so lucky to have so many given to us that we've never needed to.)  They are Nikes and they are very cute.  The orthotics fit right in, and no complaints from her so far!

Then we saw her gastroenterologist.  He was not happy to find that she had only gained 4 oz in 2 months.  She did however grow 2 inches (give or take) so that counts for something.  The reason I say give or take is because I find their height measurements to be very subjective, depending on who is doing the measuring.  Not just at this particular office, I'm talking at all of the different doctors we go to.  Getting the girls measured so much and so often, I've actually witnessed them shrink at times.  Even when the same person is measuring them time after time, its not always consistent. 

I walked into the GI office with some extra cans of Duocal, the caloric supplement Campbell no longer takes, thinking that I would donate it to the office so another patient could use this extremely expensive stuff.  Well, that visit didn't end the way I envisioned it.  Not only did he send the cans back with me, but he also sent us home with some more free samples.  Which I appreciated, but just the idea that she has to go back on this stuff is discouraging.  We add it to her food, either by mixing it in or sprinkling it on top, to help her take in additional calories.  I feel like she is doing so much better with her eating, so it is disappointing when we aren't seeing results. 

Her next appointment was with her speech pathologist for feeding therapy.  She was very happy to see Campbell eating so well, and in turn she was also disappointed to hear that she was back on the Duocal.  She said we could talk to the doc about a possible dietician referral.  She thought a dietician might be able to help us pack in more calories (in a healthy way I mean - we can't just slather everything in butter you know.  We don't want to give the child high cholesterol!) and then maybe we could get off the supplement.  Our speech path is also trying to come up with creative ways to get Campbell to drink more from the cup.  She does drink some, but she is still getting 2-3 bottles a day as well.  Next month, she will do a speech evaluation on Campbell to see where she is developmentally with that.

I just got a call from Campbell's developmental therapist, and we scheduled her bi-annual evaluation for June.  She hasn't seen Campbell in 6 months, so I'm anxious to see what she thinks.

Our IFSP meeting is scheduled for July.  This is when we meet with Campbell's entire Early Intervention care team, which consists of her physical therapist, occupational therapist, developmental therapist, speech pathologist, and our case worker.  And us of course.  We are considered part of the team too :)

Tuesday, May 17, 2011

Today Is Brought To You By The Number 12

Thats the number of scars.
The number of scars that Campbell has.
The number of scars that Campbell has from IVs, transfusions, and PICC lines.
Wow, right?
But wait.

That's just her right arm.
That's not counting her other arm, her head, and her legs.
It just occurred to me the other day.  That I had never counted them.  We were sitting by the window.  Daylight was streaming in.  The tiny white spots appeared illuminated on her delicate skin.  I noticed.  And I started counting.
I lost count a couple times and gave up. 
It literally took my breath away.
These are battle wounds from the NICU.
These are the wounds you acquire when you are fighting for your life.
Lenay has countless scars also.  And both girls have lumps on their heels, reminders of the many heel sticks they received in the NICU.
Scars and heel lumps are common among preemies.
I have this great book, The Preemie Parent's Companion, which talks about these scars, and how they grow bigger and become more obvious in the first 2 years of life.  It goes on to say that in the next couple years, they will fade and become less conspicuous.
There is something beautiful about all scars of whatever nature. A scar means the hurt is over, the wound is closed and healed, done with.  ~ Harry Crews

Monday, May 9, 2011


So this morning I got the much anticipated call from our cardiologist.

As soon as I saw the caller ID, my own heart jumped.

Lenay's heart surgeon attended a national conference and presented Lenay's case to the top specialists from the US and Europe for advice on how to proceed with her little heart.

I was about to find out if:

A) Lenay is having major surgery.

B) Lenay is having minor (yet still heart) surgery.

C) We are waiting and seeing.

I held the ringing phone in my hand and took a deep breath.

Here we go.


I closed my eyes as I braced myself for the news.

The consensus is that we just need to be patient.

Some of these doctors have actually seen this problem before, and they said as long as there isn't any progression, there is no need to intervene. 

Her heart will grow.  And the pressure gradient will go down. 

In the meantime, she will be watched closely with echocardiograms and EKGs.

I felt so much lighter as I hung up the phone!

Its not like we can get a better opinion.  I mean, we've had doctor after doctor, expert after expert, reviewing her case.  From all over the world. 

And they are all saying the same thing.

Just wait.  Be patient.  And see.

We gladly will :)

Sunday, May 8, 2011

Mama Bear

So there's this neat blog network made for and by Moms of Multiples (MoMs) and its appropriately called Multiples and More.  Each week they pose a question for other MoMs to answer. 

This week's "Question Of The Week" is: What is your favorite thing about being a MoM?

This is such a good question.  I think I can speak for many mothers, and not just mothers of multiples, when I say that my children have given me an enormous sense of empowerment.

(Sidenote: I'm kind of on an empowerment kick today because this weekend I was able to take all the kids out on a major shopping outing and to church this morning all by myself, and we all survived.  I feel I can do anything!)

As a parent, and I mean from the moment you find out you are carrying a child (or 2 ) you automatically become an advocate for that child.  You're not just looking out for #1 anymore.  That protective Mama Bear instinct kicks in and you know you will do anything for your cubs.   

In my case, I became a protective Mama Bear when my son Noah was on the way.  I had no problem asking many a stranger to put out his cigarette.  :)

5 years later, our twins were born premature, which brings us to an interesting point in our journey as their parents.  They spent a lot of time in the NICU, which in many ways, makes parents like us feel powerLESS.  It is as if the hospital is the parent, and we are just friends of the family.  They do their best to help us not to feel this way, but it is a difficult thing when you are leaving your precious babies in someone else's care.

Cut to: now. 

20 months later.  Both girls have been in and out of the hospital.  Both are still being followed by specialists.  I have copies of their medical charts and let me tell you, I could fill a bookshelf with them!

When a child has a medical condition, the Mama Bear becomes more fierce. 

She needs her questions answered.  She does research.  She seeks out advice.  She gets to know the doctors better than she ever thought she would.

All in the name of her children.


My answer is empowerment. :)

Friday, May 6, 2011

Your Angel

Once upon a time there was a child ready to be born.

The child asked God, "They tell me you are sending me to Earth tomorrow, but how am I going to live there being so small and helpless?"

God replied, "Among the many angels, I chose one for you.  Your angel will be waiting for you and will take care of you."

The child further inquired, "But tell me, here in heaven I don't have to do anything but sing and smile to be happy."

God said, "Your angel will sing for you and will also smile for you everyday.  And you will feel your angel's love and be very happy."

Again the child asked, "And how am I going to be able to understand when people talk to me if I don't know the language?"

Again God replied, "Your angel will tell you the most beautiful and sweet words you will ever hear, and with much patience and care, your angel will teach you how to speak."

"And what am I going to do when I want to talk to you?"

God said, "Your angel will place your hands together and teach you how to pray."

"I've heard that on Earth there are bad men.  Who will protect me?"

God said, "Your angel will defend you even if it means risking its life."

"But I will always be sad because I will not see you anymore."

God said, "Your angel will always talk to you about me and will teach you the way to come back to me, even though I will always be next to you."

At that moment there was much peace in heaven, but voices from Earth were heard and the child hurriedly asked, "God, if I am to leave now, please tell me my angel's name."

"Her name is not important.  You will simply call her MOM."

~Author Unknown

Happy Mother's Day to all the angels in my life :)

Tuesday, May 3, 2011

Once Bitten

Campbell didn't get her first tooth until she was 16 months old.

And now, at 20 months, as far as I can tell she has 6, including 2 molars.

...and she is learning how to use them.

By taking bites of her sister.

So, Noah never bit anyone (to my knowledge) and so I've never had to deal with this particular kid thing before.

Let me paint a picture for you.  So last week, we were just hanging out at home.  I was cleaning things up at the sink after lunch when suddenly I hear a blood curdling scream come out of Lenay.  I look over, and not only has Campbell bit Lenay, but her jaws are still completely locked down on Lenay's poor little arm.  She's like a pitbull!  Lenay was standing there in complete and utter shock, her pleading eyes locked on mine. 


Apparently, they were having a little spat over who got to play on the dragon ride on toy, and Campbell decided to end the argument abruptly by munching on her sister.  I scooped her (Campbell) up, told her no biting, and put her in timeout. 

Which lasted about 10 seconds.

And thats ok.  The separation is enough for her to understand that she doesn't like being taken away from the fun.  And maybe biting is a bad idea if that's where she ends up.

Cut to: an hour later.

We are all playing, laughing, having a good time.  Lenay and Campbell are playing with the multitude of empty buckets they received on Easter.  Buckets are fun.  You can stack them, put toys in them, carry them by their handles.  Fun.  Until Lenay made the lethal mistake of picking up the bucket that Campbell was getting ready to grab. 

Uhhhh! Campbell yelled, and this time I saw the whole thing.  In slow motion. 

At the same time, it happened so fast I didn't have time to intervene.  And I was sitting right there with them.

Campbell leans way over, her mouth open at the ready, bottom jaw jutted out.  Her head is shaking in a no-no fashion and her eyes are wide with frustration.  She clamps down on Lenay's (other) arm, and bears down with all she's got.  Lenay screams bloody murder, and looks over at me with that same "help me!" expression.

Once I pried the little piranha off her sister, she got another no biting! and timeout.

10 seconds later, everything was cool.

Well, its been a week since the 2 bites incident.  And even though the skin wasn't broken, Lenay still has matching welts on both arms.  Campbell has actually done remarkably well since then.  There have been a few times where I was able to anticipate and diffuse the situation before any chomping occured.  But then last night when I got home from work, Eric told me she struck again.

Its like living with a vampire. 

Did they cast for Renesmee yet?