Tuesday, February 28, 2012

heart

Ok.  So.

I'll start by telling you that the girl (and her brother) are still doing well.  Still smiley, still sleeping better, still seems to be very relieved that her reflux pain is gone.

And it's possible that this next wrinkle is nothing, so I don't want to over-state it.

But I haven't posted about it yet because my previous blog attempts on this issue have included words that my husband suggested that maybe I shouldn't put out there :)

So here's what's going on:

When I was pregnant with Emma, her perinatal cardiologist was very concerned about two seperate issues with her little heart.  One was an enlarged PDA and the other was some sort of co-arctation (I don't know what that second one means so I might have that wrong) ... both issues would need surgical repair.  Both issues resolved at birth.

Now, neither of these "resolutions" were unheard of, medically speaking.  Sometimes PDAs (holes in baby's heart) close on their own.  But when she was cleared from cardiology at birth, it was, for us, a little post card from God.  We knew we were starting down a long road, and for God to step in and tap us on the shoulder and say, "I am giving you a gift and the blessing is wrapped in hardship. But I am taking away this particular challenge just to remind you that I AM HERE.  My Hand is in this and I Am not going anywhere."

I still cling to that.  I still remember those early days when Emma had an echocardiogram (heart scan) that was free of concerns and I know that God used it to speak to me.  Emma's heart was not ok.  Then it was.  God gave me a hug and said, "I am with you."

Those particular issues are still RESOLVED, but there are new ones.

To clear Emma for this surgery we had to have another echo because Emma has a heart murmur.  The echo showed many things, some of which are "normal variants" (which means different from you and me but still ok).  One thing the echo showed, though, was a mild mitral valve stenosis.  (I'm sure I'm going to either explain this wrong or spell this wrong, so once again, if you're in the medical profession, read on with grace:)).  Mitral valve stenosis means that one of the valves in Emma's heart is leaking (I think).  It has been assumed that Emma's heart murmur is from a small PFO, but apparently what we've been hearing a leaky valve.

I'm not clear how concerning this is in Emma's case because the cardiologist who did the last minute scan before the surgery (who we've never met) emphasized how mild it is and was not concerned for Emma's Nissen re-do.  So we did the surgery and everything's been fine.

But last week, Emma came down with "the crud."  Just a virus that had been making it's way through our family, she had a cold and fever and retching.  Because of the retching and fever, we brought her in just to make sure everything was still ok in terms of surgery recovery. 

The princess was displeased with the exam (listen to lungs and belly, check ears and mouth, etc).  However, despite the fact that she was screaming, the doctor listened to her chest and said,

"Is it normal for her to have a super low heart rate?"

WHAT?  NO!  SHE'S SCREAMING AT YOU!  HER HEART SHOULD BE RACING!

So

We did an upper GI just to double check the Nissen and everything's just fine GI-wise.

This week is cardio week.  At the moment, Emma is hooked up to a 24-hour EKG Holter monitor to record what her heart does over a 24 hour period.  Despite the fact that she hates the wires and the stickers and wants to keep playing with the recorder box, I expect this test to be un-eventful.  She was on a monitor for both of her hospital stays, and a dip in heart rate would NOT have gone unnoticed.

The next step is that on Friday, we're going to go to a different cardiologist who works with our surgeon (just to keep this "episode of care" all in the same "house" so to speak) and re-do the echo and then see what this cardiologist has to say about the Diva's heart.

Honestly, though, she is acting just fine, so it's possible that all this will come to nothing.  We have to get it checked out, though.

Praying that Friday will show accurate answers and reassuring results

Wednesday, February 22, 2012

So THANKFUL!

When I picked Emma up from school today, the school nurse (who is in with her for 20 minutes every day to feed her during snack time with the other kids) was waiting with her.  She said that she just had to tell me how pleased she is to see much better Emma has been.  She said Emma's whole personality and demeanor has just completely lightened up since her surgery.

I thought about saying, "Well, of course it has!  You try being in constant, chronic reflux pain for weeks on end!"  But I didn't :) 

Everyone who works with Emma has said it: she's back!  I honestly feel like I have my daughter back!  Her eye contact and attention span and happy smiles and playful nature and exploring and desire to walk ... it's all back!

Thank you, God!

My favorite part of it, though, is that Charlie seems to be revelling in the change as well.  Remember when I was lamenting the fact that Emma wasn't laughing at Charlie anymore? 


These days, all he needs is a silly penguin mask :)




Monday, February 20, 2012

Tired. Grace.

Dear Emma,
It's been a month now since your surgery.  You've been home for over two weeks and in that time NO ONE has made any attempt to take your vitals or do anything else with or to you in the middle of the night.  Therefore, there should be NO REASON for you to continue to wake up at 4:30 am.
I am done with it
Love,
Mommy

~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Well, okay ... the honest truth is that Emma probably does have a good excuse for her 4:30 wake-up call; it involves her filling her diaper because we're feeding her more at night than usual because her tummy still isn't tolerating as much during the day and all that ... but the point of the story is the same.  I'm freakin tired!

And I love my son.  He totally knocks my socks off with some things he says and he's really very very sweet.  But he's so silly sometimes and sometimes I just don't have it in me ...

Charlie, it is nap time.  Yes, you may go get your dog.  No, you may not sleep with your Bible.  Yes, you should go potty before napping.  NO, YOU MAY NOT ATTEMPT TO SOMERSAULT INTO YOUR BED WITH YOUR HANDS IN YOUR POCKETS!

I seriously love this child, but today I'm tired and I'm getting over a cold and ... well, I'm sure I have other excuses, too ... but I was grumpy with him today and I'm feeling badly about it.

And confession is good for the soul, so I'm confessing

I was not mom-of-the-year material this afternoon.

Wait.  Did you feel that?

That was the sound of the world NOT ending.

I think Moms are too hard on themselves.  We're doing our best, but child-rearing is really really hard work. 

I have this running joke with some friends of mine.  If we see one of our small children doing something that would have made us GASP in shock before we had kids (you know, back when we knew exactly how to be a perfect mother?), we turn to one another, sigh, and say, "I'm a really good mom."

So if, during a playdate, a child were to walk through the living room with underwear on his head, the proper response is to shrug, sigh, and explain, "I'm a really good mom."

Charlie rides his scooter without a helmet?

I sent Emma to school without her hearing aids last week?

Neon-green crumbs on my kitchen floor that I'm assuming are PlayDoh?

My best explanation is to sigh and say, "I'm a really good mom."

And by God's grace, I will always try to be better.

But God's grace is big enough to cover the other stuff. 

So, through God's grace, I'm gonna forgive myself for my lack of patience this afternoon.

And try again this evening.






Cuz I love these kids to the moon and back

And with the help of my Savior who hung that moon and who therefore can maybe help me in the patience department ...

Maybe I can actually be a pretty good Mom. :)

Thursday, February 16, 2012

Looking back

Life is good:)

Emma is now at school 3 days a week in the afternoons, which means Charlie and I get some good one-on-one time during the day. 

And Emma is doing GREAT at school.  I can't get over the difference I'm seeing in my girl, particularly this week.  It's making me realize how much pain she really was in and how long it took to resolve.  I'm not regretting that we tried to avoid the surgery with all that Plan A Plan B medicine stuff, but it did take a long time and therefore a long toll on the girl.  I sat with her for 20 minutes today just reading a book.  I had no idea she had the ability to maintain interest in a book for that long!

Charlie is loving the "new" Emma, too.  Today I was going through their closets to find what fit and what didn't and all that ... Charlie and Emma PLAYED in the living room for a half an hour!  Peek a boo and slinky and Emma-climbs-Mt-Charlie and a whole lotta GIGGLING was going on :)  I told Charlie it made my heart happy.

I have 2 relatively smallish prayer requests, though ...

First, Josh and I aren't sleeping well.  I'm not sure if we're just having trouble turning our brains off from all this or what, but both of us are just exhausted and it's not really the kids' fault.  Please pray that God will grant us rest?

And second, Emma's PT is concerned about her leg.  For both of Emma's hospital stays, she had an IV placed in her left leg above her ankle.  They used ultrasound to place the IV, so it was a pretty deep stick, and you'll remember we were very protective of it so we wrapped her lower leg in a restraint.  Well, now that Emma is starting to practice her walking again (always with someone's help still), she's sort of "limping."  It's hard to see unless you're looking for it, but she's favoring her left leg.  Her PT mentioned this to me and I told her about the IV placement.  She said that what she's seeing makes perfect sense with what I'm describing and that "it'll come back."  But this adventure has taken too much of a toll and I'm ready to be done now ... She walked.  Then she stopped.  I'm ready for her to start again :)
video
This video is 4 months old ... I watch it occasionally just to prove to myself that, no, really, she did walk, I didn't imagine it ... but then she started having pain.  And SO MUCH went away.  I'm so blessed that it's coming back, I don't want to be greedy or impatient, but I guess I just realized today that I'm allowed to be mad at how much this reflux crap took from her.  It took away months of development and relationship and growth and gave her months of pain in return. 

We are so blessed that we could resolve it, but I wish it hadn't happened ...

Thank you, God, for your faithfulness through this season in our life.  And thank you thank you thank you that Emma is healing. 
You make me glad by your deeds, O Lord; I sing for joy at the works of your hands! Psalm 92:4

Monday, February 13, 2012

Happy Sad

"Aren't you coming, Becky?"

"Oh, no, I can't.  I'd have Emma with me."

"Well, that's okay, we just can't have her on the bus for insurance reasons, but you could follow us."

"No, I don't want Emma to be a distraction."

"Oh, she'd be fine"

yes.  but she'd be a distraction. 

Charlie's preschool class had a field trip this morning to a nursing home.  They sang songs about God's love and handed out Valentines that they had made.  The permission slip that came home specifically said that all parents were welcome to come along but not siblings.  I knew ahead of time that Charlie would be one of the few children without a parent along to see his program.

Emma is doing great with transitioning back from J to G feedings, so she can take short breaks from her tube now, but I still can't leave her for more than an hour at a time.  I'm sure, if I had asked, Charlie's teachers would have encouraged me to bring her so that I could come to the program, but I'd have had to feed her while at the nursing home ... and, for a generation that comes from a time when Emma would not have survived, that would have been a distraction.

I had prepared Charlie ahead of time.  He understands completely.  (and honestly isn't really bothered by it because if I'm not there for a field trip like this it means one of his favorite teachers gets to be his one-on-one buddy for the bus ride and the walk into the center)  He didn't even seem to notice that, out of 25 kids in his class, he was one of only 3 or 4 that didn't have a parent along with them.

I cried

It wasn't even that Emma and I didn't have other plans.  We had a lovely morning with some other moms and kids during our church's open gym time.

But I cried all the way there.

I just get sad sometimes.  And that's okay.  The Lord is close to the broken-hearted (Psalm 34:18).

But I'm just so thankful that Charlie doesn't get resentful of his sister.  It just amazes me that God had such a wonderful plan for who he chose to be Emma's big brother







And that makes me happy.

Friday, February 10, 2012

Up to

Life is slowly returning to normal.  I called all of Emma's "ologists" this afternoon to schedule next appointments because just about everyone's schedule was off after this last month.  That means, I think, that I might finally be able to exhale soon ... so what have we been up to lately?


Spelling (cuz my friends who go to school at home do it!)



Being as goofy as possible


Making puppies (and messes) from our new Play-doh kit



writing valentines ... 'I love you mom a lot' ... get it?  uh-lot?  makes perfect phonetic sense to me!


calculating how much water to add to a 250 ml can of formula to get a 75% solution


and NOT sleeping


Honestly, I dare you to put your toddler down for a nap taped to a tube that causes a fun beeping noise if you twist it just the right way! 

Cuz Mommy comes running if I make that beeping happen.  Plus, as soon as I fall asleep, someone's going to come in here and try to take my temperature again, right?  I mean, that's what I've been waking up for at 4 am all week!

But as for the 75% solution ... yesterday she did great with the new feeding schedule "practice run" with a watered-down food bag.  Today she's getting the full concentration and doing well so far.

Now if she would only SLEEP

But all in all, things are going pretty well.

Wednesday, February 8, 2012

Emma update

She's doing really really well :)

I went to conferences this morning at Emma's school.  This was the first time Emma or I had been to the building in several weeks, and Emma clapped when we pulled into the parking lot.   

Her teachers were very happy to see her and hear updates about the last couple of weeks.  They all commented that she looked better than she'd looked in a long time, aside from the fact she'd obviously lost some weight.  Our goal is for her to return to school next Tuesday.

In order to reach that goal, however, she needs to be on a feeding schedule that allows for some feeding breaks during the day.  Yesterday, we got permission from her surgeon to start feeding her 2 small meals into her tummy (G instead of J) during the day, provided her system gets some rest before and after ... so we're trying to work out a schedule that will allow her to return to some of her normal activities but still get enough calories in.



I feel like I'm back in Jr High math class ... if a train leaves Denver at 10 am traveling 45 miles per hour ...

Anyway, she seems to be tolerating the new schedule so far.  Most of the time she's still on a continuous J feed, but she tolerated a little over an ounce this morning into her tummy, which we'll take as a small victory!  If she's a good girl for the rest of the day, we MIGHT even let her go to the nursery with her friends tonight at church!!

I've been telling people that I'm one good night's sleep away from just fine, but I think the exhaustion is really starting to settle in.  Remarkably, though, grumpy-ness is not (yet?).  I'm more ... still deflating maybe?  We got copies of all the physician's reports from the hospital yesterday so I actually read the surgeon's report about the procedure.  After the initial incision, it took him an hour of working through adhesions and scar tissue before he could even find the old Nissen spot.  An hour!  That sort of hit me.  Not in a sad way, but just more like I gave myself permission to realize that we have all been through a lot

My Scripture passage for this week is Psalm 86 (I'm sort of using it to keep the grumps at bay)

Teach me your way, O Lord
and I will walk in your truth.
Give me an undivided heart,
that I may fear your name.
I will praise you, O Lord my God,
with all my heart.
I will glorify your name forever,
FOR GREAT IS YOUR LOVE TOWARD ME.

Thank you so much for your prayers!

Sunday, February 5, 2012

Love

I missed you, big brother

Friday, February 3, 2012

I {heart} Scripture

... or, giving the Holy Spirit more to work with

I've had some moments lately.  Real crossroads moments. 

No one else knew these moments were happening, because they happened in the middle of the night.  I was attempting to sleep on the parent's couch bed next to Emma's hospital crib and I was met with a choice.

These were the moments:  Do I despair or not?  Do I worry or not?  Do I trust God's faithfulness right now, in this moment, with this beeping alarm and these nurses and this problem? 

I think it's safe to say that most people (moms, particularly?) have a pre-recorded voice in their head that plays out worry, doubt and fear really well.  The slippery slope down the "What-If Trail" goes to some very dark places at 3 o'clock in the morning, especially in a hospital room.

So I wanted to share something that's helped me in the last couple of weeks.  I've been challenging myself to memorize large passages of Scripture.  Not like I did in middle school with the 3x5 cards and the "How Many Verses Can You Recite" sticker sheet, but big chunks of the Bible.  The passage I chose the week before Emma's surgery was Psalm 77.  I worked on a couple of verses at a time, every night, until I could say the whole passage.

Now, this sounds so dry and lifeless, even as a write this, but I want to share with you a couple of ways this moved in my heart:

First, you cannot memorize a large passage of Scripture that you don't understand.  You have to wrestle with why the words go in that order and why the author said that twice and why that thought comes after the thought before it.  For example, in Psalm 77 v 12:

     I will meditate on all your works and consider all your mighty deeds

Why does he mention both the works and the deeds?  Aren't they the same thing?  Well, for me, what helped me get this verse into my head was the idea that the works of God's hands are the mountains and sunset and human circulatory system, whereas the mighty deeds are the things he does with what he has made, like parting the Red Sea.  I don't know if that is a "correct" interpretation of that verse, but pondering those two words, 'works' and 'deeds', and coming to a conclusion about what they are saying to me ... it really helped with learning the passage.

Second, the mental exercise of memorizing a large chunk of the Bible gets that passage into your heart in a way nothing else ever has before.  I feel more 'ownership' of a passage if I've worked like this with it, wrestled with it, learned it in and out like a stage-actor learns his lines.  And then, it works it's way into my heart. 

What is playing on the CD player in your head?  Is it the mean words someone said to you long ago (or perhaps the mean words you said to them)?  Is it a self-righteous list of reasons you are better than someone else? (I'm so guilty of that!)  Is it the "what ifs"?  Is it worry?

When I was lying next to Emma in the hospital and she was having a rough night, I was able to re-assign my mental soundtrack from "what if she doesn't get better?" to

Your ways, O God, are holy

(but wait!  this sucks!  she's not tolerating this, what if ...)
nope.  sorry, self, you don't get to go there tonight 

Your ways, O God, are holy.  What god is so great as our God?  You are the God who performs miracles; you display your power among the peoples.

I've never been able to stop the 3 AM worry-fest like that before.  Having to work to recall the Psalm pushed out the fear and worry.  It gave the Holy Spirit something to work with in one of those moments where I could NOT have formulated a prayer on my own with my own words.  I owned these words, though.  They had made it into my mind and heart and were there when I needed them. They helped remind me in communion with my God that He has a bigger plan and that worry was not going to help anyone.

God relates to His children in many ways.  One way He talks to us is through Scripture.  I just wanted to share with you a way He's been relating to me lately.  I hope you're encouraged? 

Have a great day!

Thursday, February 2, 2012

Wait ... what?

Just so we're all on the same page - I have no idea what happened.  I don't know how she got sick.  I don't know what we did that made it better.  I don't know how to prevent it from happening again.

But she's home.

One pound lighter ... but feeling fine

You know what I love the most about my daughter?  She still loves me.

She looks like a freakin heroin addict right now with all the needle pokes up and down her arms and legs.  I helped hold her down for each and every one of those pokes.  But she still loves me.

When Josh came to the hospital yesterday and sat with her while I packed up our stuff, she enjoyed sitting playing peek-a-boo with him.  But when I was done packing and sat down next to him, she looked at me, gave me a big smile, and excitedly waved her arms for me to pick her up.  Do you not remember the last 3 days, baby girl?  Why on earth would you want to be held by me?

Someone says something insensitive to me and I stew about it.  I hold her down to the bed while medical professionals torture her and she loves me anyway.

I'm pretty sure that, in the forgiveness department, she's not the one with the disability

Wednesday, February 1, 2012

So confusing!

I'm sensing that this might be a two post day ...

So Emma had a rough night.  It may be because a less-than-compassionate nurse's aide came in at 4 am to do vitals and it was that dangerous hour where Emma had had JUST enough sleep to think she could be up for the day ... or that she pooped twice ... or she may be feeling better enough to notice that she's in the hospital and not be sleeping well here ... but it was a bit of a rough night.

Today, she's acting much much happier ... except she doesn't seem to want to lie down for a nap.

Her surgeon is still concerned about her pancreas, but her GI doc thinks it's ok.  We did another blood test and her enzyme levels are even higher than before (high = bad), but I think they are debating right now whether or not they are high enough to worry about.  I think we may do an ultrasound this afternoon to settle the argument.  I'm not sure.

I'm at the point where I want the issue settled (of course), but seeing her disposition today, I would trust them if they said we can check out of this fancy hotel :)


Come on, doc, look at this face!  Does she look sick to you? :)