Tuesday, January 31, 2012

Praying

Emma had a much happier evening after her nap. 
I got some good smiles and play time before putting her down.  I'm taking it as a good sign that she currently does not seem to want to go to sleep and is playing with her leg-cuff in hopes of finding that IV to pull on ...

But I digress

The nurse just came in with a can of full-strength formula.  Emma is now being fed her full concentration at her goal rate.

This is where things went poorly last time.

I don't mean to be negative!  I'm very hopeful that she will do great tonight and we will get to go ... you know ... that Plan That Must Not Be Named Lest We Jinx It ... tomorrow afternoon if she tolerates this through the day tomorrow.

However, the test for c diff just came back negative.  That's great news, don't get me wrong, but it means that we seem to have an increased probability of not knowing what caused the badness.  We have given her no medicine.  Nothing has changed in her care since we brought her in, other than giving her 24 hours of GI rest.  If her surgeon is right and her pancreas was just angry, then that's exactly what she needed and all will be well ... but I have to admit I'm still a little nervous.

So, Prayer Warriors!

We are praying that Emma tolerates this regimen of feeding and is well and healthy and healed.  We are also, praying, however, that if Emma is not going to tolerate this, that she demonstrates it loud and clear in the next 12 hours so we can be in the right place to help her and not back to blurry-eyed-middle-of-the-night decision making about whether or not something's really wrong.

We serve an awesome God who tells us to come to him with our specific prayers.  We are blessed.

Still don't

We have a surgeon who is sure he knows what's wrong and a GI doc who's sure it's something else.

:)

The surgeon looked at Emma's blood work and saw an enzyme elevated that indicated an inflammation of her pancreas.  He thinks that the pancreas is just angry about being messed with during surgery.  If that is the case, and the pancreas is inflamed, it would put pressure on the stomach, causing the retching and general unhappiness.  Retching leads to less food, less food leads to dehydration, etc.

The GI doc saw Emma's blood work and told the surgeon that the enzyme was only SLIGHTLY elevated and a tummy bug is more likely.  With Emma having been on antibiotics after surgery, she thinks Emma is back to having our old friend c. diff, which would explain retching and diarrhea as well.  Emma finally provided a stool sample for the nurses this morning, so cultures are being run to test for that.  But those tests won't be back for a few days.

Meanwhile ...

If it was her pancreas, the treatment would be gut rest.  She had gut rest yesterday with the IV, so the pancreas should have settled down, in which case she'll tolerate food beautifully tonight and we'll go home tomorrow afternoon.

If it was c diff, the treatment would be medication.  The GI doc has started Emma on a probiotic that is sometimes used to treat c diff, but will be good for Emma's tummy even if she doesn't have c diff.  If this treatment works, she should start tolerating food soon, in which case we can maybe go home tomorrow afternoon.

Either that, or we don't know what's going on

Emma is not a happy Bear today.  We got a few smiles this morning, but she's also been pretty cranky, wanting lots of snuggles this afternoon.  I love the snuggles, but it makes me nervous that she's more cranky as we're starting to feed her ... or maybe she's feeling better enough to be pissed that she's back in the hospital!  Let's hope for that, huh?

So that's what I know

Or don't know, as the case may be :)

Monday, January 30, 2012

Back in

I'm not really sure what to say.  For the past couple of days, Emma has been doing more and more retching.  And, like the lobster in the pot, I think we didn't really notice how bad it was getting over the weekend.  It was worst at night and night emotions and night decisions are never trust-worthy.

So when we called our primary pediatrician for an appointment this morning because we had been up with the Bear retching for most of the night, we were surprised when she told us to go to the ER.

I'm not sure if it's a bug or the pain medicine or what, but she's not tolerating food in either the G or the J.  She's not showing any other signs of illness, but retching on a brand-new Nissen is not okay.

So after many horrible, awful attempts, we finally have another IV in her leg.  I think the strategy for at least the next 12 hours is to let her gut rest.  We're waiting to see if she produces a stool sample that they can test for the usual suspects, also, but I really have no idea what's going on.

God does

But I don't

So we're back in the hospital again.

Saturday, January 28, 2012

The Shouldn't Haftas

I had a bad case of the Shouldn't Haftas this morning.

I shouldn't hafta do this.
I shouldn't hafta wake up early and assemble tubes and syringes and feeding bags.
I shouldn't hafta hook my daughter up to a tube all day.
I shouldn't hafta say 'no' to Charlie when he asks me to build Legoes with him.
I shouldn't hafta ...

Shouldn't Hafta-itis is bad.
It's bad for a marriage.  (common side effects are the 'I-do-more-than-you-do-flu')
It's bad for relationships.  (symptoms include a rash of 'my-life-is-way-harder-than-yours') 
It's bad for your waistline (chocolate may temporarily relieve symptoms but not cure the cause)


The only antidote for me seems to be remembering that this is what love is.

And for me, I remember that Love did a lot of things for me that He should not have had to do.

And I bet He didn't think ...

I shouldn't have to be born in a manger
I shouldn't have to get my feet this dirty
I shouldn't have to tolerate friends who will betray
I shouldn't have to carry this cross
I shouldn't have to die

That's how much He loves us.

So I humbly ask for forgiveness.  I need to trust the God who set me on this path. Complaining like the Isrealites in the dessert is a sinful lack of faith in the God who has demonstrated great faithfulness unto me.

His love is the cure for the Shouldn't Haftas

Thursday, January 26, 2012

Flower Girl






Exhale and Expand

You know that day after a stressful and/or busy period of time when everything is finally starting to settle and everyone finally relaxes into sleep enough that the whole house actually seems to exhale?  That day when the kids sleep in so late that you know that there will be laundry to be done because the little bladders can't handle this but you don't even care because they've been through so much that you know they finally feel secure and calm enough to really sleep so you let them?

I love that day.

Today was that day.

Sort of :)

The kids slept in, so this morning was good, but I'm still feeling strained.

I think what I'm feeling is that old familiar adjustment period.  That balloon labeled "Normal" is expanding again to include something new.  This time New Normal needs to make room for two tubes on the Bear and continuous feeds and pain management meds ... plus "Mom, can you come help me find this gray hinge-y Lego piece?" from the Master Builder downstairs.  He's very very good at hearing that I can't do that right now, but I really really hate saying it.

 Life will settle in again, I'm sure if it ... but it hasn't yet.

But He gives strength to the weary and increases the power of the weak

So I'll be okay.

Wednesday, January 25, 2012

HOME!

There is no place like it

I don't have any cute pictures of us all here because, well, it's a little busy around here.  With J feedings and a healing GI system, we're supposed to be feeding her 24 hours a day.

We're just trying to figure out what that looks like with an active and tiny 3 year old! :)

But we'll get it.  We're so happy she's home

Tuesday, January 24, 2012

Don't jinx it

There's a word that starts with an 'H' and rhymes with Gnome that someone around here heard a rumor about happening today, but Emma has to be a good girl for the rest of the day before that rumor is official, so I'm not going to jinx it by saying that word out loud for the next 5 hours ...

So in the meantime :)

She's had a really really great morning! 

We had an absolutely awful night last night, but her surgeon is convinced that it's just muscle cramps from her gut waking back up.  Emma produced other 'evidence' that supported that theory this morning as well, so I'm really hoping for a good nap this afternoon.

Her IV finally failed today, but she's been on J-tube feedings for 24 hours now, so they are sure she won't need an IV anymore anyway.  We just have to make sure she tolerates everything (including pain medicines that have been going through the IV) through the tube for a bit before ... You Know What :)

And in preparation for the Plan Which Shall Not Be Named, we got a bunch of literature and information about her procedure and I thought I'd share this picture from it.  This is the simplest explanation I've seen of the Nissen wrap.  The only difference is, you'll note that for Emma the word "laparoscopic" is crossed out!  The surgeon reiterated today how much scar tissue there was to deal with once he was in there, but he's very pleased with how well it went.


But I can already tell that she's on the road to feeling better than she's felt in a long time.  She had a really content playtime with me this morning, smiling with me and even giggling a bit.


Charlie was able to come and visit his sister last night and drew her a picture on her white board.  He told me that this is a picture of him and his "Suppy Puppy" playing with Emma and her new "Doggy Friend" at home.  Eventually the picture grew to include a fort they would build in the living room also, but you get the idea :)


So I have high hopes for the day!  Hopefully the next time I write to you it will be from ... well, you know :)

Monday, January 23, 2012

So much better

I just spoke with the surgical resident.  She approved an increase in Emma's tube feeds, which means Emma gets a break from the IV tube!!! YAY!

Now, I say "gets a break" because the IV is still in, it's just not being used at the moment.  We did need it for morphine a little bit ago (the other stuff alone wasn't cutting it).

And this increase from the J tube is only if she tolerates it.  If her gut isn't ready, she'll "dump," and we're back to the IV.

But she had a brief period this morning where the only cord or tube that was attached to her was the feeding!  We actually got down on the floor and played!!



I've even gotten a couple smiles, and the old "Mama" sign!!

But then she needed some morphine, so we're back on a pulse ox, but at least she's resting comfortably.

Thank you so much for all the prayers and meals and visits and everything!  The Body of Christ is absolutely an amazing blessing, thank you thank you thank you.

His faithfulness is Great.

She POOPED!!!

Praise God, she pooped!!!

I've never been more excited about poop in my whole life.  :)

She's starting to wake up, so I'll make this short.  We are starting the slow process of feeding her through her J-tube.  Her nurtrients are still coming from the IV, so we are feeding very slowly through the J just to see if she's ready to tolerate food.  Then we will start the slow process of decreasing the IV and increasing the J feedings.

Our prayers for the day are the she'll tolerate the food and that her pain will be managed.  The docs want her off the morphine and the IV Ibuprofen is bad for the kidneys, so they are trying something new.  I have to admit, I'm a little nervous about it because it must be given through her stomach to work properly, so I'm praying that her little tummy is ready for that!

Thanks so much for your prayers!

Saturday, January 21, 2012

Still here

Last night was very rough for the girl.  The morphine doses were not keeping up with her pain, a problem which was compounded by the Diva's lack of understanding about why all the wires are attached to her.  She has quite a few accessories, and she doesn't approve of any of them.

Today seems to be a bit better, though.  They've added another pain medicine that seems to be keeping up better than morphine alone. 

She's sleeping more today.

And, on the home front, Charlie had a wonderful birthday party today.  Lots of wonderful family and friends showed up to help and celebrate our boy.  We love you all!  Thank you.

Thank you so much for all your prayers.  We've specifically requested prayers of protection for her IV site, because if her IV site fails, sticking her again just seems cruel.  She already looks like a pin cushion between the 3 sites that didn't work while trying to place this one in the OR (thankfully she was already under for those) and the 3 sticks that didn't work for a failed blood draw this morning.  This IV is her only source of nutrients, fluids, and medicine right now. 

They were hoping to try feeding her through her J-tube today, but (quote) "she needs to start tooting first"!  Apparently everything hasn't quite woken up yet.  Not being able to start that today probably means that coming home has been pushed back a day, but that's okay.  If she needs more time, we'll give her more time.

So the IV is very important right now, as is rest and recovery.  We are thankful that our nurse today seems very compassionate regarding our little sensory princess, so she's gotten a bit more rest and relief from the pain today.

This is a rough road, but we are so thankful for all the wonderful people God surrounds us with who walk so lovingly with us.

Friday, January 20, 2012

Surgery is done

That was a very long day.

The princess did very well with surgery.  Mommy did not, but Emma did great.  The surgeon said that there was a lot of scar tissue to work through, but that once he was in it went well.

He re-did her Nissen, but did not do the secondary pyloroplasty procedure.  As a compromise,  the surgeon placed a temporary G-J tube.  Now she has a button with 2 ports, one going to her stomach and one connecting to a tube that goes into her intestines.  They want to let her stomach rest for a few weeks while her Nissen heals, so we'll be feeding her directly into her intestines.

He was also able to use the original incision, so while this was a large opening, she will not have a new scar.

The interesting twist is that he was able to look around her G-tube site and saw that it was pushing up against her rib cage.  He said that there is a bundle of nerves running along the bottom of the rib cage that, if the tube is rubbing against, could be causing significant discomfort.  So he moved her G-tube site to lower on her tummy.  So there are two scars on her tummy to heal, but hopefully we've removed more than one possible sources of pain for the Bear.

We're here in the hospital for a few more days.  She's on several methods of pain management, so they are monitoring her very closely.

We are so so thankful for all the prayers!

I've been meditating on Psalm 77 - "When I was in distress, I sought the Lord ...I will meditate on all your works and consider all you mighty deeds.  Your ways, O God are holy.  What god is so great as our God?  You are the God who performs miracles."

Thank you, Jesus, for bringing Emma safely through surgery

Thursday, January 19, 2012

Soap

We've never had to buy this stuff before.



It's the special soap to wash her skin before surgery.

It's kind of throwing me for a loop.

Tomorrow morning, we are going to wake her up early to wash her skin with this special soap.  It's to prep her abdomen for an incision.

They are going to open her up.

I can't do this.  I've prayed for God to take it away.

But I think I'm getting the same response Paul got.

"My grace is sufficient for you.  My power is made perfect through your weakness."

Okay, then, God.  I'm trusting ... I'm casting my cares and knowing that you will sustain me.

Please pray for our little girl? 
Thanks :)

Tuesday, January 17, 2012

This should really burn more calories

We had a DAY today. 


(She even looks cute in hospital clothes, doesn't she?)

Yesterday, Emma had her pre-op appointment for her big surgery coming up.  She did great for the physical.  She's kind of decided that our Pediatrician Who We Love is maybe a nice enough lady that she can examine her without screaming.

Not screaming is good ... but it allowed our doctor to get a really good listen to Emma's heart.

(don't worry, this turns out ok)

Some of you may remember that Emma had multiple heart defects in utero, all of which resolved at birth ... well, she still has a heart murmur.  Until now, her specialists have said that the cause of the murmur is nothing we need to worry about, but our pediatrician said that she heard it more distinctly than ever yesterday and wanted Emma to have an echocardiogram before surgery.  Emma also needed an endoscopy before surgery, so we got both procedures done today.

(and, just for fun, we asked if her ENT was around and if he wanted to join the party.  Seriously.  We weren't planning on it, we honestly just popped into the OR and asked if Dr L was around and if he wanted to peek in Emma's ears while she was under.  He did.  They look great.  YAY!!  I am thanking God tonight for his hand in the details of today.  We weren't planning on being at downtown location of our Children's Hospital, but the suburban location wouldn't put Emma under because of her airway.  Since we spontaneously had to switch to the downtown location, we were able to get all 3 procedures to fall into place with only one sedation.  I'm so glad it worked out ... because how often does that happen?)

So Emma went under general anesthesia today and her docs took a look around. 

Her heart is ok.  Not the same as yours and mine, but ok for now :)  Approved for surgery.

Her tummy looks ok, too.  Esophagus looks red and irritated, but that's why we're doing the surgery, right?  The GI doc doing the scope also confirmed that he didn't have to push through a Nissen wrap at all when going through her stomach opening.  Her original Nissen seems to be completely open, leaving her esophagus wide open for reflux.

We also got the results of her gastric emptying study from last week.  She's emptying her stomach just fine, so I think our decision is made about the pyloroplasty.  We will just do the Nissen and not the secondary procedure.  She doesn't need any help getting her food to go "south" quicker, we just need to keep it from also going "north."

So I think we've got all our ducks in a row.

Honestly, we had a really really long day (and wake-up from anesthesia was really rough), but I saw the Lord's hand all over the way the day came together.  It's reminding me of His presence and giving me peace. 

Thank you all for your prayers!

Monday, January 16, 2012

Do not

Do not be anxious

Do not fear

Do not worry

Do not be dismayed

Do not be afraid


Do you struggle to get "traction" with these verses?  Do you have seasons in your life when they seem like cliche platitudes?

I do

I'm leaning

I'm falling hard into them right now

I'm trying to rest in God's hand, but sometimes it feels more like being pushed

it's an act of will sometimes

and sometimes

Like they are the net when I'm in free fall

And I have to stop

Because that's the only option

I have to listen

What is He saying?

Do not fear for I am with you.

God

is with

me

We cry "Abba, Father."

Daddy

not a spirit of fear but of sonship

I am his daughter

and so is Emma

So do not fear for I am with you.  Do not be dismayed for I am your God.

I (He ... the One who flung the planets into orbit and made her heart beat)

I will strengthen you and help you, I will uphold you with my righteous right hand.

and the peace of God

transcends all understanding

will ...

Wednesday, January 11, 2012

Just keep swimming ...

One foot in front of the other. 

Lots to report, but first ...


Charlie turned 5!

I love this boy so much, and I can't believe how big he's getting.  I'm proud of who he is and how much he's learning.  His sweet, tender, generous, kind, sensitive, loving heart makes me melt.  He's ALL boy these days, running and building and joking and joyful.  Mommy and Daddy love you to the moon and back, Charles Monster!

And in other news ...

Emma's EEG results came back (I was super annoying and called and convinced them to ask the neurologist on-call to read the data ... sometimes you've gotta be the pushy Mama-Bear to get the information you need...).  We are glad to report that there was no seizure activity during this test.  Given that they tried all the lights and everything to try to induce a seizure, Josh and I are satisfied enough to interpret this to mean that her behavior is pain-related, not seizure-related.  The results were still marked as "abnormal," so I'm sure we'll have to discuss that at her neurology appointment in February, but for the time being, we're comfortable putting this issue on the back burner.

The next two weeks are going to be consumed with learning as much as we can about Emma's GI system.  We met with her GI doc to discuss her reflux issues, and she agreed that it was time to go ahead with the Nissen re-do surgery.  The surgery is scheduled to be in about 2 weeks.  In between now and then, we need to gather as much data as we can to decide about a possible secondary procedure called a pyloroplasty that they may do along with the Nissen re-do.  Her GI doc doesn't think she needs it, her surgeon does. 

Emma and I spent the morning in radiology at Children's doing a gastric emptying study.  Basically, her breakfast was "spiked" with some radioactive stuff that they watched go through her system.  She did really well.  It was scheduled to be a 2 hour study, with the tech taking images every 10 minutes to watch the stomach empty.  After an hour's worth of images he told me that there was nothing left in the stomach, so we could be done.  Emma hated the imagining part (screaming, pooping, gagging, retching, choking), but the pictures were quick and between them we just sort of hung out.  That part was nice.

So we wait for the official results from that study, but I'm preliminarily optimistic that these results may mean that we can avoid the second procedure!  We'll see ...

Next week, we have Emma's pre-op appointment (please pray Emma doesn't get sick between now and then?!?!?!) and then an endoscopy under general anesthesia.  This is to determine if there's anything else in there that is either contributing to the pain or needs to be addressed before surgery (like an ulcer or infection).  Assuming all is well, opening up her abdomen comes next ...

Thank you so much for your prayers.  We've actually got a pretty fun weekend planned before the real craziness hits, but we'll keep you posted on how everything progresses.

God bless! 

Thursday, January 5, 2012

The Princess was Displeased

We had a 4-hour EEG this morning with the Emma Bear.  It was pretty awful
 After keeping her up late and waking her up early, we brought her in to have 20 electrodes attached to her head.
 Now I know that the idea of "sensory issues" is not something you would understand unless you have a child in your life who has them, so let me break it down for you.  For whatever reason, she is very defensive of her hands, feet, and head.  Trimming toenails results in blood-curdling screams.  Brushing her hair has just started to get a little better, but putting any sort of clips or pigtails in her hair is ... well, we call it a rodeo :)  For whatever reason, she acts as if she interprets it as pain when someone has to mess with her head.  Luckily, however, she's pretty forgiving when it's over, so you just have to bite the bullet and do whatever you need to do.

Daddy got the super-fun job of giving her the Bear-hug today while I tried to distract her and the tech placed the sticky stuff.

She was so angry she pooped.  She screamed so much it caused an awful retching fit that caused her to stop breathing for a bit while she worked on swallowing and clearing her airway.

It breaks my heart that she doesn't understand.  There's no explaining it to her.  She can't be "negotiated" with.  She can't voice her concerns and wouldn't understand the reasoning behind what we're doing anyway.  Not that we don't try, but it's still gut-wrenching to watch her panic.

But just like with pig-tails, once the electrodes were placed and secured, she sort of seemed to forget about them.

The tech said we needed to record 20 minutes of quiet awake time, and then a cycle of various stages of sleep.  Emma cooperated beautifully with that, pouting in Daddy's lap for awhile and then falling asleep on Mommy's shoulder.  The tech was even able to attempt to induce seizure activity with some rapidly-blinking lights.  After the terrible prep, Emma was actually a perfect patient!  We were out of there in under 3 hours!

Unfortunately, I don't have any results to share.  We didn't see any of the behaviors that made us question seizure activity, which I suppose is kind of frustrating that we didn't "catch" it.  The tech said that a doc needs to interpret the data and that we would be hearing from him.  My understanding is that the plan is for him to call if he sees something.  If she didn't have any seizures during the test, then we discuss next steps at our appointment in Feb.

So for the time being, no news will be good news.

I guess :)  I think, if we didn't catch anything weird on this test and we are still concerned, we could move on to a 24 hour EEG.

But we walked out of that appointment saying "Never Again!"

One step at a time.  We'll see what comes of the data we have.

Thanks so much for the love and prayers!

Wednesday, January 4, 2012

Prayer Request - test tomorrow

Happy new year :)

So I haven't blogged about our latest "wrinkle" in Emma-stuff because I haven't really thought it through until tonight.

When you describe some things you've seen to the pediatrician and she refers you to neurology and they schedule a test to check for seizures and that test gets scheduled within a week ... you don't really stop to take a breath ... mostly because then you'll feel overwhelmed ... sort of like how cartoon characters can run across the top of the water as long as they just keep running and don't stop or look down.

Tonight I'm up late because Emma needs to be sleep-deprived for the test tomorrow, so I've finally gotten a chance to think about what exactly my prayer is for this situation.

We have, for quite some time, noticed that Emma does some weird things.  Sometimes her eyes roll back.  Sometimes she laughs hysterically for no good reason.  Sometimes she'll stop playing suddenly and sit for a minute and then just lie down.

The laughter is usually associated with being tired.

The other stuff, since it has increased lately (especially the randomly lying on the ground moaning), we've just assumed is pain-related. 

I could also be seizure-related, too.

And if we're deciding to do surgery based on the assumption she's in pain, we need to know for sure that what we're interpreting as pain is NOT a seizure.

So tomorrow she's going in for a 4-hour EEG, where they stick things to her head and watch her brain activity for seizures.  She'll love it.  Especially since she's only allowed to sleep for 5 hours tonight. (apparently you're more likely to have a seizure if you're tired ... who knew?)

My prayer is this:  PLEASE let her show these behaviors tomorrow during the test.  Whether they are seizures or not, please please let us "catch" them so we can see what her brain is doing when she does those things.  Please let us have peace that the test is accurate so that we will have clarity moving forward with the reflux surgery decision.

I'm so blessed by the knowledge that I know I have friends who will be joining me in this prayer