Tube Be Gone aka "Tubie Gone"

On January 21st, we were all but certain that Annika's feeding tube would be removed, so we declared it Tube Day.  Our basis for this was in the Dr.'s words from the previous visit, "If she continues to do this well, we'll take the tube out next time!"  And she was doing more than well.  James took the day off, I gave the kids the day off from school, and we happily picked up our house together so we would have a nice place to celebrate Tube Day when we got home.  "Spirits were high" is an understatement.  This day marked a major milestone in the life of our family.  Although Annika had not been using her feeding tube for a few months, actually removing the tube from her stomach felt like the exclamation point at the end of this chapter in our days.

Skip ahead to the Dr. visit.  Annika IS doing well, and it IS time.......just the Dr. feels a little uncomfortable removing the tube today.  She just had another little girl have a tube removed and the hole in her stomach leaked and leaked and never healed, after having the tube for only 4 months.  Annika had hers for nearly two years, so...what are the chances of a natural closure?  Why not skip all the headaches of leaking and just go straight to surgery where the results are certain?  When our Dr. saw how sad we were, she gave us the option to remove it that day...but it was against her advice.  So we didn't.

I don't think I've ever heard my family sit so quietly as they sat that day on the drive home.  Only sad exclamations pushed the silence aside on occasion, "So it isn't really Tube Day!"  "We did all that cleaning for NOTHING!"  "We probably have to do school now!"  "I'M HUNGRY!"  James and I barely spoke.

No, I didn't make them do school, but nothing could replace the joy that was lost.  We were ready to celebrate with games and laughter and decorations and food!!!  And the celebration had been postponed.  So what to do today?  Nothing much.  We played mariokart and bought a dozen donuts to drown out our sorrows.  Unhealthy coping mechanisms-I know.  E-mail me about it.

The big question became, "When is Tube Day??"  I couldn't answer.  I was told to wait to hear from the surgeon.  The surgery department finally called, SIX days later, to say that they could schedule Annika's consultation with the Dr. for the end of February and the tube would be removed who-knows-when later.  Oh, but wait!  Our Dr. had mistakenly referred her to the wrong region. 
"Great!" I thought, "Maybe the right region will get her in sooner."  I sent a text off to our Dr., but heard nothing back.

The next day, the appointment center called, "I'm sorry to say, your Dr. had a family emergency and will return to the office the end of March.  But you still need a referral in order to have her seen in Orange County."
"Ok, great.  Should I call her primary care physician?  Can he refer her?"
"That might work.  I don't know.  I'll send a message to another GI doctor and see if he'll do it."
"Ok, what about the surgeon that placed the tube.  I have his number.  Is it appropriate for me to text him about this?"
"Yes.  Do that."

Ok, so I did and he texted me back right away, "I'll have my nurse call you."

Fabulous!   We're getting somewhere!

The phone rings and I jump up hoping to hear from our surgeons nurse, only to have the lady from the appointment desk explain to me that things really aren't looking good in getting Annika referred to Orange County.  What?  This is really a hard thing!

So, the nurse calls an hour or so later.
"When would you like to schedule this appointment?"
"Anytime!"
"Ok, how about tomorrow?"
"Sounds great!"
"But we still need that referral.  I can't schedule it without a referral."
"You heard me say that her Dr. is gone through the end of March?  Out of the country?"
"Yes, well.  We need it."
".............................................how do you suggest we get it?"
silence
And then.
"She was seen by this doctor for the g-tube placement?"
"Yes."
"How about we don't call this a consultation appointment but a follow-up from the last one and we skip the referral altogether?"
"Yes!  That is exactly what should happen!  Let's do it!"

And so, the next day, Annika woke up with a fever of 101, but there was no way I could cancel that hard fought for appointment.  Late in the afternoon, Annika and I trekked alone to see Dr. Lau.  She was ready to show "Doctoh Yow" her tubie and to do what he asked (and her fever had gone down).  Dr. Lau entered the room saying that 60% of removed tubes heal on their own.  He was willing to schedule her for surgery, but in his opinion, it was better to try a natural healing first.  I 100% agreed.  I've already seen the fear in this little one waking up from general anesthetic three times and she is one miserable cookie.  Enough trauma for my baby!

And then it happened.  I lay Annika on the bed in the room, turned around to grab her pacifier, and by the time I gave it to her, her tube had been removed.  I didn't take any pictures and I was the only one there to give a small cheer.  The doctor taped some gauze over the hole in her stomach and that was that.  I snatched her up as she cried in fear.  She really didn't understand why tubie had to go.

In an attempt to both distract and celebrate, I walked her down to the cafeteria and bought us a shared cup of strawberry and vanilla frozen yogurt.  We sat down to eat it just outside the cafeteria doors near some plants.  This little one, who wouldn't open her mouth to drink even a drop of liquid a year and a half ago, stood by my side on the cement and licked the yogurt off her spoon.  It was a quiet time.  We took pictures.  We laughed.  We shared bites.                     Just her and I.  

I looked up at the building towering above us and could pinpoint the exact rooms where, almost two years earlier, she was a tiny little one with so many newly discovered problems.  Here I had learned about my baby's heart failure.  I had waited tearfully for genetic testing to return which would tell me if she had a genetic disorder.  I had had an endless bombardment of conversations with so many different doctors and specialists.  I had learned how to use and care for an NG tube and then a gtube.  I had feared for my baby's life on the day the doctor panicked over her test results.  I had seen her bloated and struggling for breath after being IV'd too many fluids.  I had held her down for nearly 4 hours as nurses struggled to find a vein for an IV.  I was told, on my birthday, to never even think I would nurse my baby again.  I had walked every floor and knew every color scheme.  I had wandered every path around that hospital.  I knew the name of the guy who took my meal orders and had ordered every item on the menu.  I had set off the alarm and shut down the hospital three or four times after the nurse failed to disarm Annika's lo-jack before our daily walk. So many decisions, questions, fearful moments, tears and prayers happened right above where we sat and, although James and I walked this road together, for the most part, the time in the hospital was just her and I.

And so, somehow, although Tube Day dawned on January 29th and we didn't know it, although the whole gang missed out on the celebration at the removal and there was not a bit of a party that day, somehow....somehow....it seemed perfect.

After we finished our frozen yogurt, all Annika wanted to do was run to each rock and stand on it, "Yook, Mama!"  And at each fountain, as she touched her hand to the water she would twist back to make sure I was following.  And at each bench we encountered she would pat a spot for me to sit and ask me to help her up beside me.  And we sat for about ten seconds and kept going because there was so much to explore and she was so free and full of vibrant life!  Life!  This precious gift.  I laughed every time she screamed and squirmed to be released from my joyful hugs.  "Scream away, you little life!"  And that day, too, was a precious gift to me.  A perfect brushstroke in the huge painting that is God's big plan.  Although I don't understand all the "why's" to the place and the path that He has brought our family on, I can genuinely praise Him with all my heart because I feel and appreciate the blessings more than ever before.


Ecclesiastes 3:1-11

"There is a time for everything,
    and a season for every activity under the heavens:

2     a time to be born and a time to die,
    a time to plant and a time to uproot,3     a time to kill and a time to heal,
    a time to tear down and a time to build,4     a time to weep and a time to laugh,
    a time to mourn and a time to dance,5     a time to scatter stones and a time to gather them,
    a time to embrace and a time to refrain from embracing,6     a time to search and a time to give up,
    a time to keep and a time to throw away,7     a time to tear and a time to mend,
    a time to be silent and a time to speak,8     a time to love and a time to hate,
    a time for war and a time for peace.

9 What do workers gain from their toil? 10 I have seen the burden God has laid on the human race. 11 He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end."

AMEN!

Two Months Later

Yes!  It's been over two months since my last post and such a whirlwind of events that I've not had the time to write.  Actually, I probably could have squeezed something in sometime, but everything was sad. :-(  I'm finally feeling a bit of a cloudbreak.  Hopefully those clouds will just blow away!  So, because I feel like we've been barraged enough to be at least a little interesting, here's what kept me away........

On November 9th, I last posted about Annika's freedom from the feeding tube.  It had been over a week since her last feed, and now it's been over 2 1/2 months since her last hook up to the tube.  Yippee!!!

On November 11th, Annika's leg was broken.  It was such a sadness to see this little girl who's been through so much have to face yet another ordeal.  All my newfound time (from not dealing with a feeding tube) was taken (and more!) because of the broken leg.  The first week was very painful for her and I spent a lot of time comforting, medicating, and distracting.  The next couple weeks I carried her around everywhere.  That took care of November.

On December 4th, my husband received an injection in his spine in an attempt to help relieve some chronic pain.  I don't know how much I've mentioned this issue, but not a moment or day goes by when James is not in pain.  We were hopeful for some reprieve.  It didn't work.

On December 10th, James and I left for a trip to Florida-a conference, not a vacation.  The whole week leading up to it was insane with all the preparations needed to leave the kids behind, on top of the fact that James was sore and in more pain (oh ironies) from his injection.  That trip brought us emotionally low and than high.  It was not an easy trip, but definitely a positive one.  We returned home on the 15th.

On December 17th, James started having some stomach pain.
On December 18th, he came home early from work and noted that the pain seemed to be mostly focused on the right side of his abdomen.  He could not sleep or find any way to relieve the pain.  His kind father came over in the middle of the night to sit with the kids and we were off to the ER.  We arrived at 1:15 in the morning...
On December 19th by 6:25 in the morning, James was on the operating table having his appendix removed.  Fortunately, the procedure was laparoscopic, so the recovery window was 2 weeks rather than 6.  He came home from the hospital that day.  Our poor kids, had to spend a bit more time away from Mommy and Daddy.

On December 22nd Annika got her cast off of her leg.  She couldn't walk well so I had to be nurse to both her and James.

On December 25th.  Christmas, of course!  :-)  It was a wonderful day celebrating the birth of Jesus.

On December 26th Annika turned 2.  I praise Jesus for the gift of this little one.

 Sometime in the beginning of January, we discovered that Isaac had a broken toe.  It had happened around the 17th of December, but was overshadowed by James' emergency appendectomy.  Poor Isaac.  :-(  This news was the cherry on top of the bittersweet cupcake of our year.

AND THUS ENDED 2014!!!!!!!!!!

On January 5th James went back to work, but was still in too much pain to make it the whole day.

On January 11th, we had a birthday party for Adela.  A Wedding Party....ha ha!  (As a side note, birthday parties are not my first love.  Nor my family's.  I am an unpleasant person for days before I have to run a birthday party.....)

On January 13th Adela turned 6.  What a beautiful little encouraging heart she is starting to show!

On January 17th I sat down to write this blog while James died in Mariokart, over and over again.  Rainbow road.....

On January 21st we look forward to Annika getting her tube out!!!!  There's going to be a celebration at our house on Wednesday if it happens!

That's it.  And here I sit in this chair. A whirlwind of life has happened in just two short months.  It's almost ridiculous.  I just sit here, and it doesn't all seem real.  I'm feeling a little detached.  When a week of peace passes by, I feel like it's been peaceful forever around here.  "How are you?" you ask.  "GREAT!" I say!  Really, I feel we are doing fine.  I don't know if I'm experiencing some sort of disorder OR is this the peace that passes all understanding that I've wondered about?

But people have loved on us with meals and prayers and words of encouragement.  I didn't cook dinner for the entire two weeks of James' recovery.  God's love shining through His people enabled me to focus on my family through yet another trial.  People have so faithfully supported us these past two years.  It's been a witness and a testimony to me.

Thanks, guys.  You know who you are.

Letting Go

Today is the 10th day that Annika is without any g-tube feedings.  Ten days!  No more carrying Stripey, her little freezer bag, everywhere.  No more machine beeping in the middle of the night.  No more taping and hooking and setting up each night.  No more tube being pulled out of her stomach.  No more thoughts about it - every day, all day!

It's pretty crazy though.  I can place myself back in the hospital room the day of her surgery in May last year.  I so clearly remember the first instructions from the nurse, where I was standing in the room, the smells of the place and not knowing how to touch that little tube now attached to my 5 month old's stomach.  I can see my tiny one lying on her back with the white bars around her as the nurse demonstrated how to clean the tube, change the gauze, and how to twist the tube daily.  I see clearly the little table at the end of her crib, scattered with foreign medical paraphernalia that would soon become so familiar.  I feel myself walking by his side and hear the doctor's voice echoing in my mind, "We don't know how long...no, there's no way to know.  And when she does start eating on her own, she'll probably have the tube in for at least 6 months.  That's how it is with heart babies (heart babies) (heart babies)."  

When they sent us home, it was a strange thing to realize that home wasn't quite home anymore but an extension of the hospital.  Annika had her own IV pole, and the weird hospital noises sounded normal the next time we visited because we lived with those beepings every day now.  And there's so much more.

But here we are now.  November, 2014.  Annika's last g-tube feeding (hopefully ever!) happened on October 30th.  The week before, her hero GI doctor proclaimed out loud that "this child doesn't need me anymore!  I mean, look at her!  I want all her doctors to see how amazing she looks.  Can this be the same, failing little thing I first met in the hospital?" and she gave us one more week to taper her off of her g-tube feedings.  I exuberantly cancelled school for the rest of the day, drove to James' work to kiss him, decorated the house with the kids and served a celebratory meal.  James added to the joy by buying me a beautiful bouquet of flowers (and he scored 50,000 points).

That pole and the pump and the formula and the syringes and the medical tape have been my constant companions now for 17 months.  It felt weird, in those last seven nights of working with them, to think that I would put them away and possibly never use them again.  I actually found myself feeling sad.  What?!  Am I such a person of habit I could grieve the loss of these things I never asked for or wanted?  Can I be sad about something I've been anticipating ending since day one?  I admit, I was happy to have a week to wean myself off of Annika's medical supplies and my routine.

The day came, though, and I gladly packed everything into a box and slid it under the crib.  I folded the IV pole up and pushed it next to her supplies.  But as I worked, I remembered how casually and quickly the nurses in the hospital disposed of these plastic supplies-new ones every day.  Would they laugh at me, holding onto garbage?

The whole thing made me a little introspective.  What else am I holding onto?  There's so much that happens in life that we never expect, and yet, each little thing-as it touches us-leaves a little mark, a little habit, a little change.  Sometimes it's subtle, sometimes not.  Sometimes it's physical, sometimes not.  Sometimes it's good, sometimes not.  But every time, our selves, our spiritual selves react to that thing as we run to God, or push Him away.  And every once in a while, if we stop and look, we find that we love that thing we thought we never could and we wonder how it ever happened.  How did this become a part of me?  

And it's hard to let go.

To Do

• Grocery shop
• Clean 
• bathrooms
• kitchen
• + wipe cupboards and walls
• + mop
• living room
• bedrooms
• Dress the baby
• Feeding therapy with the baby
• Dispense medications
• Mix formula
• Clean up time with the kids
• Clean up kids spills and messes (5-10X daily)
• Read with each kid for at least 10 minutes each day
• Listen to my kids
• Make Breakfast
• Clean up Breakfast
• Make Lunch
• Clean up Lunch
• Make Dinner
• Clean up Dinner
• Make snacks 
• Clean up Snacks
• Comfort crying kids
• Supervise the baby outside
• Change diapers
• Wash laundry
• Fold laundry
• Guard laundry from jumping kids and swinging objects
• Put away laundry
• Bathe kids
• Take kids to the park
• Mediate kids' arguments
• Discipline
• Discipline again (and again and again and again)
• Make Doctor's appointments
• Go to Doctor's appointments
• Order medical supplies
• Go the the Library
• Drop and pick-up kid from co-op
• Home school my kids
• Make sure I'm teaching the right curriculum
• Follow the proper method when I teach
• Document what I teach
• Document how in depth each kid knows what I've taught
• Document each state standard they have met
• E-mail people
• Other communication with people
• Pay bills
• Wash the van
• Call the phone company
• Paint that bare spot on the wall
• Fix the shower
• Fix the bathroom drawer
• Fix the shelf
• Exercise
• Eat healthy
• Shower
• Brush my hair
• Look at my husband
• Talk to my husband
• Beat my husband in rummicub
• Play the piano
• Play the guitar
• Sing
• Spend quiet time in prayer
• Read my Bible

*******************************************************************************************************

When I quit my job after the 3rd baby came, someone asked me what I was planning on DOING all day at home!?  I guess, before I quit, I managed to fit all these things in, somehow, while also working outside of the home (and so many people I know and love follow the working road still-I commend them for their hard, hard work and perseverance!).  At any rate, this is where I'm at today and this is my current list of this year, this stage.  I am not sitting around bored.  I never wonder what to do.  In fact, as you might have noticed, I feel a bit crazy most of the time.

This list is my list.  You have your own etchings that make the busyness of your life - different from mine.  The point is-we've all got lists of demands.  My list is not in any particular order and it's not comprehensive, but I got too bored writing it to add anymore to it.  Really, the most important part of my list are the very last two listed.  And-ironically-spiritual battlishly-sadly-or somethingly-those tend to be the most difficult two to fit in.

Just over a year ago, when I was in the dredges of sick baby and I couldn't often go to church and I was running all the time to keep everyone alive at home and I was drop dead tired, I had to find another way spend time with God.  What I had known as worship, up until then, was to spend time reading my Bible each day and to meet together on Sundays with other Christians.  Also, I had experienced a few camps and retreats which bolstered my faith.   But I couldn't do any of that anymore.  I was so supported by people around me, but at the same time, so alone in the task given me.  I prayed to find a way to integrate worship into my everyday life, into that list, as I cooked and diaper-changed and disciplined and figured out feeding tube stuff.

God really met me in a special way as I prayed for ideas (these were really fast, desperate, on-the-run prayers).  In my tiny claustrophobic condo, I needed to be reminded of God more.  So I, firstly, put up signs with verses.  These visually remind me of where my thoughts ought to be and of God's amazing plan. One of my very favorites says simply, "Abide in Him."  Abide in Him.  I remember a specific moment when I was particularly flustered in my motherhood journey and had just lost my temper with my kids.  I walked the 5 steps from their bedroom and around the corner to the living room, leaned my head against the wall, looked up.......Abide in Him.  It's like a teal whispering every time I look that direction.  Abide in Him.

A second way God led me to integrate worship was to put my hymnal on a stand right next to the kitchen sink.  I specifically chose that location.  For some reason, washing dishes was where my mind would start to wander in judgement, criticism and self-pity.  I hated washing dishes, and maybe this was why.  It was my angry spot.  But now, if I'm not singing a song and my mind starts to wander in the wrong direction, I intentionally avert my eyes and mind to the words in the book- "Holy, Holy, Holy, Lord God Almighty-early in the morning my song will rise to thee."  Not only have I become less resentful and angry, but I've grown closer to God in singing these old words and my kids occasionally burst out in something amazing ("This is my STO------RY, this is my song!).  My angry spot is now my worship spot.  That's the kind of thing God does, the great heart-changer.

Lastly, because I felt so completely desperate and helpless, my prayer life increased ahundredfold.  I wasn't on my knees for hours on end-no-not a chance.  I didn't have that time.  But I was folding laundry (prayer), sweeping the floor (prayer), talking to Doctors (prayer), hearing my baby gag (prayer).

The list.  I write it out to remind myself that, yes, it is a lot-but it could be more.  Yes, the load feels heavy at times.  But also, yes, God is with me right in the middle of it all.  And, to remind myself to continue in the lessons He's so firmly taught me - to Abide in Him, to worship in the tasks He has given me, and to pray continually.  To know that the last two listed - spending quiet time in prayer and reading my Bible - are worth fighting and sacrificing for.

So, now that things are back to "normal,"  we're not missing church anymore.  Corporate worship is so much sweeter now that I know Jesus a little better.  I remember trying to live, walk, breathe worship before, but until the rug was yanked from beneath my feet, I didn't really get it.  Not that I do it all the time now.  Nope.  It's still a struggle and a battle.  But now I get it.  I've lived it.  I know it. 
And that's the gift of these last 18 months.

Done

I was done.  Really done.

I lay in bed, thoughts swirling tumultuously – Oh, to drive away and keep going!

 I just wanted it all to stop: the kids, the husband, the life.  When I looked towards them:  they needed something.  Always.  When I looked towards him:  he suffered pain.  Always.   When I looked towards myself:  insufficiency.  Always.

In my mind, I drove away.  Over and over again.  I ran away and left because I wanted quietness and peace and I knew they’d be better off anyway.  Too bad, even in my imagination, that every destination was wrought with its own set of overwhelming problems.   I had to get a job or help other people and still shop for food and cook it. Nowhere could I go and just be.  Just sit.  Just be worthless. 

So I didn’t drive away, but I felt sad.  Really sad.  These life problems – too much!  I felt the sting and disappointments of the cards I’d been dealt.

After two long nights of horrible, torturous thoughts, Sunday morning dawned.  I awoke defeated and stonefaced.  I’m too stubborn to ever quit, but that’s what I wanted.  These thoughts of overwhelming worthlessness had agonized me long enough.  I knew they were not of God but felt so trapped.  I also knew that I needed prayer and council and quick!  I’d been in that same spot almost exactly a year before and James had sent me to some rejuvenating solitude, but this time I felt that I needed some listening people ears.  I prayed that our mentors would be in town that weekend, that I would see them at church (not a given in a megachurch), and that they would offer to talk to me that day.  And so, as I stood, they walked through the door. I got to the point and told them I was barely holding together and please, could they talk with me soon?  Yes!  Yes, they could!  How about Tuesday?  Or Wednesday? I don’t remember the days, really, I was crying.  How about today?  YES!  TODAY!  God answers prayer.  God loves me, even when I’m not looking in the right direction.

A pivotal day.  A praising Jesus day.  A day that they sacrificed to listen to this hurting girl.  And I told them everything.  James sat in the other room while I told them all my sadnesses, all my recent sins.  I poured it all out.  The bittersweetness of life, the unknown roles, the expectations, the exhaustion, the tension, the resentment, my critical heart and the darkness of the days ahead.

And here’s the thing.  As I sat, drinking my water, and soaking in their council, I realized that they did not tell me that I was doing a great job and that things would get better soon.  They didn’t tell me that my husband was wrong, or my kids.  Who they pointed to, gently albeit, was me and Jesus.  My time spent with Him.  My time listening to Him.  A verse to replace the lies.  And the great importance of recharging, of not making excuses against rest until I felt insane, was insane.

I’d lost it, nearly, for lack of rest; physical and spiritual. 

For lack of wisdom in knowing the right time to stop. 

For lack of ability to push past the feelings of guilt in needing time for myself. 

And, in not taking that time, I’d made a hard situation worse. 

In these last couple weeks since I broke, God has been faithfully prodding me onward with His love.  More than that, He’s been lifting me up.  I’ve received letters, and phone calls, and other encouragements from people.  The sermons and talks have been exactly what I needed to hear.  My humble, loving, open and willing husband has been praying for me and our relationship has a renewed breath in it.  Everything that I’m hearing each day seems to have a synchronized tone of stopping, resting, being.  Of course it’s God telling me this.

In a way it’s funny.  In my moment of desperation, I wanted to stop and rest to be, and I could not although I was shutting down.  It’s also beautiful.  God has given me my heart’s desire although I have only slightly slowed.  

Moses asks, “Who am I, that I should [do this great task]…?” and God does not directly answer his question.  He responds, “I will be with you” (Gen 3:11-12).  Does it matter who I am or am not or how great the task at hand is when God is with me? 

Lamentations 3:19-23 says, “I remember my affliction and my wandering, the bitterness and the gall.  I well remember them, and my soul is downcast within me.  Yet this I call to mind and therefore I have hope:  Because of the Lord’s great love we are not consumed, for his compassions never fail.  They are new every morning; great is your faithfulness.”  This verse keeps coming at me.

James and I have set in place a survival plan, more than that, it’s a living life well plan.

* Thursday nights have become sacred.  One or the other of us has the evening off, completely off.  It’s my Thursday today.  I think I have anticipated this lifeline evening every day for the last 11 days.  

*James has declared a night where we debrief and check in with each other. 

*We keep each other more accountable for time spent reading our Bibles.  

*And less distraction of screens!

Am I the only one out there who forgets to stop?  Who hits the wall once in a while?  Who keeps running so fast that I lose my focus completely?  I don't think so.

My problem, like Moses, was that I was looking too much at myself and the situation.  I was too small and it was too big. 

I became overwhelmed and lost and didn't hear the words that were and are always there.

I AM WITH YOU.

ONE YEAR - Ode to the Feeding Tube

From 7 months to 17 months of her life -  it's been a year.  The day after Memorial Day last year Annika was released from the hospital with her 4 day old g-tube in place.  It's been a year of g-tube and and a year since her last hospitalization.

How grateful I am that I didn't know, and don't know, how long this tube would be/will be with us.

But a year seems worthy of commemoration and I haven't written much about daily life with a "tubie," as they say, and so now I bring you both the accolades and the trials - a little glimpse into the grunt happenings around our place.  Some of it might make you queasy, if that's your way.  Also, this is also a very long account.  Consider yourself forewarned.

Let's start with g-tube 101.  It is a "button" which is surgically placed.  The external side you can attach a feeding tube to, and the internal side has a little balloon that is filled up with 4-6 ml of water.  It is an open wound that I change gauze on daily.  I never understood a love/hate relationship so well until I met our little g-tube attached to my failing baby.

There are a few obstacles to be overcome when you're feeding a child through a tube.  First of all, the baby has a little 12 inch length of tubing with connects to her little button and this connects with the tubing from the pump.  Now, the tubes have to be able to pull apart from each other because otherwise her tube will come out completely from the site - and that's no good.  But it's also no good if they get pulled apart because suddenly the pump side is "feeding" whatever thing it landed on and kid side of the tubing is gushing everything out of the stomach that you just worked so hard to fill up.  Also, the kid side has a little med port, which is really nice when I'm giving meds, but super not nice when Annika flips it open like she does (and, once again, empties her stomach contents over everything).  We have wisened up and we now tape this portion of the tube to her back if she's feeding during the wakeful hours of the day.

Second obstacle.  The pump can be time consuming, alarms become status quo, and sometimes they stop working completely.  Our old kangaroo joey jammed up all the time.  I spent my life trying to unjam that silly thing which usually didn't work out and so I had to unthread the bag, get a new one, and prime everything through again.  This sounds really fast when I write it.  But it wasn't.  And if the baby was hungry or the other kids needed something....well, you get the idea.  I remember working with it one time when we thought we might actually make it to church on time but then it started alarming and we had to pull into a side street and a cop drove by us a couple times, I don't know why but I guess we were okay, and the kids were sitting there patiently because they were already used to it and we didn't make it to church on time.  This was, and is, a typical story (the late to something because of the pump part...not the police part).  Although, I'm happy to say, it's happening less often these days.  Anyway, it can jam because a glob of formula is stuck or there's a kink/twist in the tubing somewhere or I forgot to unclip the clip on Annika's part of the tube or it's not sensing the food or it was fed some air.  The joey didn't care about air.  It fed it right to Annika which was super fabulous when she was vomiting all the time and wasn't able to burp because of her Nissen surgery for her reflux.  FYI-we like our new pump better.  Get a zevex.  Lastly, if the thing decides to die on you, you get to call the medical equipment provider to send one out to you stat.  I think we're on our 4th pump.

Third obstacle.  Ignorance.  We had no idea what we were doing when we first got this thing.  I mean, the basics, but no idea.  And I really had no brain to think of anything on my own and I didn't want to read about feeding tubes because I was touching them all the time and I thought my doctors would have told me anything I needed to know.  In retrospect....wrong!  I finally had an urge, sometime last fall, to find some connection with others who lived with these things every day.  I found feedingtubeawareness.org which led me to message boards, blogs, and stories of kids who had been weaned from feeding tubes.  It encouraged me, gave me hope, and educated me.  I learned about how to mix the formula I'd been using in a way that wouldn't jam the pump.  I learned that I could use ice packs during the longer daytime and night feeds so that I didn't have to get up every four hours, but only at the finish.  I learned that I should be using medical tape a LOT more.  I learned that we were in a good, good place and that there were so many others with less hope.

Fourth obstacle.  The button can come out completely.  When this little one was learning to crawl and before I realized the great benefits of medical tape, she pulled her button out of her stomach frequently.  Frequently!  I remember one day it was 3 times-but that was excessive.  So, when the button comes out, you have a hole in your child.  You must lay your child on her back so that the stomach contents remain stomach contents.  You must tell your 7 year old and 5 year old (then only 4) that you have an emergency and they go, wash their hands, and get the necessary supplies (gauze, syringe filled to the 5-6 ml mark with water, water-based lubricant, and a new button if the old one looks gross).  Your 2 year old (now 3) is hopefully behaving himself.  You then reinsert the tube and fill it up with water.  Sometimes it's hard to get in and the tube bends and she's crying and it's really sad for her and you - but better than letting some doctor do it.  Other times it goes right in and she looks at you like she's unsure if she should cry or not and she's surprised that she's not.  But you make a funny noise and she laughs it off.  One time the button came out during the night and the hole was too closed for me to reinsert in myself which meant a trip to the ER where they checked us in and then checked us out soon after and sent us upstairs to the surgeons office where he used smaller to larger metal pokers to distend the hole back to size.  It was horrible.  And it was without anesthetic.  I hope it never happens again, but if it does, they will use anesthetic!!!

Fifth obstacle.  The child wants to be mobile but she's connected to a machine.  This was especially sad when I didn't know there was a backpack and she had to be attached to the IV pole all the time.  The transition to backpack was wonderful - but it had to be upright or it fed her air (and she was moving all the time so how do we always keep it upright?) and it was too heavy for her to carry herself.  Therefore, I have spent a lot of time this past year holding Annika's backpack while she plays.  This takes great skill and maneuverability.  :-)  When we switched pumps, things got even wonderfuller (why not?!) because it was lighter, the backpack was smaller, and the pump could be turned different ways without feeding air.  Really fabulous!  She was carrying it around on her own superbly, but then she fractured her arm falling down some stairs the day before Easter.  It was just too sad to see a little 16 month old with a full arm cast carrying around her own feeding tube bag.  But the cast came off 10 days ago, and she's been off and running with her little backpack again.  There are times when she does not want to carry that bag around and she thrusts it at me in frustration and I either follow her around with it or call a kid to be on "Annika duty" for the remainder of her feed ("The worst part of my day!" says Isaac.  Adela likes it, though).  All three of them are so good with her in general.  When they see that she's pulling at her tube because she's left the bag behind, it's become almost second nature for them to carry the backpack over to her.

For most of the year, Annika has been on a strict feeding schedule of every three hours during the day in order to meet her weight goal.  So 7, 10, 1, 4, and 7 we measured, filled, primed formula through the tubing and started the feed.  When she  finished, we cleaned out the bag with water and flushed water through the tubing.  This is time consuming even when you don't hit a glitch.  That was our process May 2013-February 2014.  Around February, we received our new pump AND I read somewhere that we didn't need to be rinsing out the bag every time but can just take it out from the pump and store it in the fridge between feeds.  None of the nurses or doctors told us this option, but it's a discovery that has revolutionalized our lives!  Now I don't have to measure because I can program the pump.  I can fill that little baggie up to the brim in the morning and just use an ice pack throughout the day and/or throw the bag in the fridge.  And to make things better, Annika now has only 2 feeds during the day because she's now getting most of her calories at night so that her daytime appetite will pick up (and she's swallowed a little bit more...I do think it's helping).

Her feeding speed has varied, but has averaged at about an hour per feed...so she's been essentially an hour on and two hours off.  Unfortunately, back when she was vomiting so much, when we felt that she'd lost most of the feed, we'd start over and the 3 hour count would change times - also the speed would slow so that she was connected to the pump even longer.  And then there were those days, I thankfully can't remember even the month, when she was on continuous feeds for 20 hours a day because she couldn't tolerate more than an ounce and a third each hour.  The speed of her feed is always changing.  When she's sick in any way, she tolerates less (vomits more) and so we have to slow her down again.  It takes a few weeks to work up to the speed she was at before the sickness.

One of the things we do is "vent" our baby.  Most people burp their babies but we attach a large, empty syringe (with the "sucker" part pulled out) to our baby's tube in order to vent the air out.  Sometimes it bursts out in bubbles, sometimes it makes an actual burping sound, and sometimes it simply vents and you can't see much.  Venting happens a lot more often on those sick days when I do it every 3-4 hours.  Normally it's once a day and, lately, I've not been doing it at all because Annika has started to burp and she doesn't seem to be uncomfortable.  We can also use this same method to take food out of her stomach if she's looking green or if we need to see how much she's digested (which we did a lot in those first months when we were figuring it and her all out).  It's important to hold on tightly to the connection between the syringe and the tube because if you don't and she makes a quick move, you might suddenly shower yourself with partly digested formula.

*********************************************************************************
As for now, my day looks a little like this:

2 or 3 AM - shut off the machine. untape, disconnect and flush out the tubing.  (James and I switch off nights)

8 AM - put Annika in her chair and try to feed her breakfast.  she's usually not interested but if we cheer a lot she will take a few bites.

10 AM - put Annika down for her nap and give her a dose of stomach emptying medication.  after she's asleep, sneak into her room (my room!) and attach her to the tube.  the child is used to this and so it usually goes well.  after the feed is done and the alarm beeps, sneak in again, flush the tubing, sneak away. she gets about 5 ounces over around 35 minutes time right now.

12 PM - back in the chair for lunch. she likes to try most things but spits most food out when she's done.

2 PM - another feeding attempt in her chair because she's hungry.

3 PM - another nap and another sneak into the the bedroom.  i'm trying to do her tube feedings while she sleeps so that she doesn't associate it so much with satiating her hunger.  we want food to have that association.

6 PM  - dinner time and more chewing

8 PM - a couple more medications (stomach emptying and reflux). change the gauze around the site. vent her (if needed). put her to bed.  change the settings on her machine to a slower night feed (2 1/2 ounces per hour).  tape the med port shut and use a clamp to hold the tubing together throughout the night. tape all of that together too because Annika chews it apart.

10 PM - check everything before going to bed to make sure she's not twisted or leaking anywhere.  adjust and/or change sheets if necessary.
*********************************************************************************

All of this might look like a lot, but it's so much less than it was and I'm starting to feel like we're more of a "normal" family.  Yes, the time it takes to care for Annika is still more than your average baby, but the gap has lessened substantially.  Hallelujah!

With every darkness there's at least a spot of light.  At first, I thought there was only a smudge of brightness to be seen, but now I'm seeing more and more the shining beauty that has come from this.  Firstly and practically, at times it's lovely to have direct access to your kid's stomach.  When she doesn't want to take her medication by mouth - down the tube.  When she's sick and getting dehydrated - pedialyte down the tube.  And, most importantly, when she will not eat (which is why she is a tube fed baby in the first place) - food, down the tube!  And this baby is growing and developing and exploring like every other little 17 month old and she's vivacious and chatters away in her own language like anything.  I shudder to think of how she would be without the tube, and wonder if she would even be with us anymore.  I'm not at all certain.  Actually, I'm more certain that she wouldn't be.

The brightest point of having a feeding tube as part of our lives is the transformation that has occurred in our family.  It's been a process with lots of groanings along the way.  But, ultimately, we've had to learn patience - so much patience.  We've learned to cherish one another more because the reality of each temporal little life has sunk deep.  We've learned to embrace the sufferings that come our way and to trust that God has a reason for the pain in the big painting of eternity.  We've learned the importance of stopping, resting, and rejuvenating.  For many, many weeks I was unable to attend church.  I've learned how to incorporate worship into the every day and it makes my heart leap to hear my little children singing out random praise, "This is my stooooory!  This is my song!  Praising my Savior, all the day long!"  We are not close to perfection - as none of us can be this side of heaven, but it's a beautiful thing when you can see the fingerprints of God all over a situation which felt so distant from Him only months before.

As I write this out, it's difficult not to add in everything else that went along with the story, because the feeding tube is only a part of it.  There's also the vomiting and heaving and record keeping and doctors appointments, the oral attempts at feeding and, really, everything that led up her getting it in the first place.  And there is the endless line of people who have embraced us.  But all of that is in a different post for a different day-some of it already written.

Thus ends my tribute to the horribly beloved g-tube. We give thanks to God because He has given man the inquisitive mind to explore and to learn about this complex body He has created for us.  We thank Him for giving our family the opportunity to experience the life of a child who wouldn't have had a chance a century ago.  And we thank Him for the breath of life we breath today because who knows what tomorrow holds?  We do not know.  But we do know that we are so very blessed!

As are you.  Praise Him!



This has been a theme song this past year:

https://www.youtube.com/watch?v=KNYnXwkWrnw

 Psalm 139

1 You have searched me, Lord,
    and you know me.
2 You know when I sit and when I rise;
    you perceive my thoughts from afar.
3 You discern my going out and my lying down;
    you are familiar with all my ways.
4 Before a word is on my tongue
    you, Lord, know it completely.
5 You hem me in behind and before,
    and you lay your hand upon me.
6 Such knowledge is too wonderful for me,
    too lofty for me to attain.

7 Where can I go from your Spirit?
    Where can I flee from your presence?
8 If I go up to the heavens, you are there;
    if I make my bed in the depths, you are there.
9 If I rise on the wings of the dawn,
    if I settle on the far side of the sea,
10 even there your hand will guide me,
    your right hand will hold me fast.
11 If I say, “Surely the darkness will hide me
    and the light become night around me,”
12 even the darkness will not be dark to you;
    the night will shine like the day,
    for darkness is as light to you.

13 For you created my inmost being;
    you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
15 My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.
17 How precious to me are your thoughts, O God!
    How vast is the sum of them!
18 Were I to count them,
    they would outnumber the grains of sand—
    when I awake, I am still with you.

Throwback

Last night and today have been throwback days to the days not so long ago.  It's amazing how quickly one adjusts and adapts.  I've barely written about the going's on's around here because it's become so normal to us that it feels like it must be mundane to everyone.  But then I step back and remember that not everyone feeds their kid through a hole in her stomach and I remember the days when I didn't even know what a gtube was.  A year ago.  Wow.  A year ago we were still in the midst of determining the why's of her failure to thrive diagnosis and I was in agony over the thought that I was starving my baby in spite of my best efforts.  One short, eternal year ago.

So today.  We have vomiting in the house again.  It's wild.  This baby vomited until it was normal and a non-issue with her pediatrician.  She vomited more when she was sick or had an infection or whatever.  But suddenly, mid-December, her little sphincter decided to shape up or something and - without any notice (she could've warned us!) - she stopped vomiting.  I carried around the vomit trays for a while and....she really stopped.  So I put them away.  The carseat cover rejoiced.  I held my breath for a while and then slowly exhaled.  Maybe this is to stay??

I've really been soaking in the glories of a life with more than laundry and vomit mop up.  We've done more grocery shopping during the day (because it's awesome with four kids!), the mornings are busy but no longer hyperventilatingly so, we've made it to church (although 'on time' has yet to be perfected), and we even managed a field trip to the science center last week.  The freedom is exhilarating!!!!!!!!  Admittedly, we still spend a lot of time in our condo/cage, but at least the option to go is usually there.  That, in itself, is worth gold.

But now we have a bug.  It started with kid #3 and moved down to kid #4.  Of course.  Elijah can't resist a grab and a jab and a poke and a suck at her pacifier.  He's neurotic about it.  Poor Annika.  Didn't have a wink of a chance.  So, in the middle of the night, she starts gagging and heaving like she used to do, and I'm out of practice so I stumble out of bed a little too late and grab at the stack of vomit trays which is stuck behind a big vacuum-sucked bag of blankets and I wheel to the left, swoop down and catch the last splash.  Better than nothing, but a fail.   Vomit on her bed and her sleepsack and her jammies and on her legs and my arms and a little bit in the vomit tray.  I'm ashamed of my performance.  After all those months of practice!!!  After two more sets of jammies, new sheets for my bed, (yeah, I missed again when I was washing my hands), some more throwing up in the sink, wiping of smelly skin and diaper changes, we land back in bed an hour later.  This really is so 2013.

But the thing that gets me is this.  I pull her out of that crib and I'm rocking her, holding her, telling her it's okay and directing her towards the tray - and that vomit smell brings me back, and the closeness of comforting her pulls at my heart, and somehow I weirdly miss it.  In my defense, I will say that milk vomit is sweeter and lighter than food vomit, but I wouldn't call it lovely or desirous and I wouldn't recommend it as a wearable scent (although I confess, I've done that too for longer than I'd like to admit on those days when it seemed pointless).  It's all very strange.  How can I miss a stench?  Or any of it?

Association.  That smell, it brings me back to the hospital and the heart and the early mornings and the tiny, confusing baby.  My bedroom, my house had that scent.  I'd open the door to pick up Annika from her nap and the scent greeted me first.  My car often carried it, and I carried it wadded up in plastic grocery bags in the diaper bag.  It became the scent of little Annika.  And as I held her last night, I missed my baby, because she's probably my last and now she's all grown up into a 14 month old who runs and says "uh-oh" and who sings "Les Mis" and who doesn't need Mommy quite so much.

I know I'm sentimental.  I hang on to mementos of past days for too long - like my 8th grade t-shirt and tie-dyed track shirt.  I'm not going to bottle any eu de vomit up for future whiffs.  But I guess it makes the sick days a little sweeter because they bring me back to the whirlwind days where my strength could not be my own, where my knowledge of God and love for Him grew, and to the feel of a tiny baby head nestling against my cheek.  And I am reminded of the hope and the prayers of all who uplifted our family.  My baby is gone.  She's been replaced by a sweet smelling toddler.  But, oh - the memory of. . .the knowledge of. . .the comfort of. . .and the assurance.. . .of sweetness and change rising forth from the stench.