Dwelling Place

"There is a river whose steams make glad the city of God, the Holy place where the most High dwells"  Psalm 46:4 (NIV)

I was enthralled by this verse from my bible reading on January 31.  I wrote in my journal that day:
"The Holy Spirit dwells in me like a peaceful, nourishing stream.  I should strive to be that Holy place for the God most high so that river would run through every part of me or situation I'm in. That is how there is joy in every circumstance."

I think David was speaking much more literally about the city of God, but aren't we supposed to be the living, breathing, moving, dwelling place of God?  There is a river whose steams make glad the city of God.

Nothing says that this river flows when times are easy or things are going right.  As a matter of fact the verses before that one speak of  destruction as a picture is formed of mountains falling into the sea and oceans roaring.  But there is a river whose streams make glad the city of God. 

I'll admit right now, I've never been a real "psalmy" girl.  They just haven't spoken to me the way they seem to speak to others, although I've wanted them to. 

Years ago, when Emily and Abby had a horrible muscle lengthening surgery and I was going nuts (literally) from not sleeping, my friend insisted that I open my bible.  She knew I needed to let God teach me during that difficult time.  As soon as the words were out of her mouth Hebrews jumped into my head.  Over and over as we spoke Hebrews flew around my brain.  As I hung up the phone with my friend, I decided to have a little chat with the Lord.  Feel free to insert an image in your head of buckets of tears surrounding a crazy woman parked, but still sitting in her car, speaking a little loudly toward the roof.

HEBREWS!!!!  REALLY?  AFTER NOT SLEEPING FOR 22 DAYS, YOU WANT ME TO READ HEBREWS?????  I AT LEAST DESERVE A NICE LITTLE SING-SONGY-PSALM FOR ALL MY TROUBLE!  etc...

This argument was met by the silence of a very patient Father.  I opened my bible to Hebrews that day and was blessed beyond measure by the goodness of the word of God. 

This time around, it was this wonderful Psalm that so spoke truth into my life. 

I am tired and overwhelmed.  I am everything any human would be in this situation.  Abby is walking a very fine line between staying home and going back to the hospital.  Her care is beyond anything I've ever been responsible for before.  Her nausea is constant.  My confidence in knowing what she needs is situational at best.  The constancy of her medical care is mind-boggling.  Yet, there is a river whose steams make glad the city of God, the Holy place where the most High dwells. 

For me, that is how the Lord eases my burden.  That is how He, whose load is light while mine is heavy, helps me to find peace and rest here in this place of unrest.  His words of comfort flow like that river.  This world will surely fall away, but that city where the most High dwells will endure. 

Sometimes, as I write I wonder if I'm telling the whole truth.  Everything I've said is what sustains me daily.  It is the rock that I stand on, and the soft spot that I land on --wow!  Look at me getting more Psalmy by the minute!  But, there are also moments of everyday when I feel like crying because it's so hard.  There is simply no time for tears.  There have been times when I've wondered if we should have left the hospital.  There are even brief moments when I feel completely alone with a very sick child in a giant world.

That's when those words fill me and replace all of those very "normal" things that I'm feeling.  It's not what I prayed it would be, but God does have a plan.  It's not perfect and I am far from even being good at walking this road of faith, but I guess the point is that God is faithful when I don't know how to be.  His Holy Word and His truth fill in all of the gaps in my own abilities leaving me wanting only for our home, my daughter, and myself to be a place where the most High dwells.

So Busy!

This is going to be a quick post and I'll get right to the point.  I feel like my head is going to pop right off my shoulders.  Man, what a tough, infomation-packed 24 hours.

Before we left the hospital, Abby began having an increase in nausea and residuals.  Both have further increased today.  We are managing it for now, but it makes me nervous.

Leaving the hospital was wonderful, even though it's scary.  Coming home was the right thing to do.

Abby, we're going home!



 

Last check around our temporary home



Abby leaving the unit for the last time.





She was so excited to leave, but all the motion from the car and so much moving around made for a difficult day with nausea. 

We were both excited to come home to see the awesome signs the girls made for Abby.

So sweet!

Not a flattering angle for me, but I love Abby's face as she sees her balloons

Poor Em was a little worried about Abby, but we snapped the shot



We didn't leave the hospital until late afternoon, so a parade of people came to our home throughout the evening to set us up.  Feeding and IV pumps, supplies, formula, and fluids.  We had to try to get her medications because she went in the hospital on no regular meds.  Unfortunately, two of her new meds didn't come in the form ordered, so they had to be made at a compound pharmacy.  She went without them last night, but today I tracked down someone to make them.  No easy feat.  I took Hannah, Emily, Nola, and Sarah to the pharmacy, which gave us a chance to grab a quick lunch in the park while we waited. 

Emily had a bit of a rough seizure day, so she's a little tired here.  She's still struggling with seizures almost daily.  Spending so much time away from her, it didn't take long for me to realize she's still pretty fraglile.

I spent the afternoon turning Abby's "girl" room into a pseudo-hospital room.  I am completely overwhelmed by the amount of supplies we use and how significant her  needs still are.  I hope we both settle in soon.

Those shelves shouldn't be there, oh, or the IV pole.

I think it's still too new to know how well we're doing.  Abby will have blood work on Monday and I am hoping she's not dehydrated.  She's having high residuals--I'm not even sure how much because I want to keep her fluids in her.  It's complicated, but she needs every drop of what we've got her on. 

We're praying Abby has a better day tomorrow.  Her nausea and residuals need to go way down.  The good news is, overall she's happy.  She loves being home and isn't at all freaked out that Mommy is hooking her IV up.  I wish I could say the same.

Thanks for keeping Abby in your prayers as she transitions home.  If you are praying for my Uncle Frank and my neice Avery, they are both still in the hospital.  Franks surgery went well, but he needs a lot of prayer.  Avery is doing alright, but the Doctors are trying to figure out what's going on with her.
Busy family :)

Home Sweet Home

This is not a drill!  We are going home...no really, we are. 

I just put Abby down to sleep for the last time in her hospital bed.  I am filled with conflicting emotions, but excitement trumps them all. 

I walked down to the cafeteria this evening and wondered what to get for my last dinner from this place.  After 36 evening meals here, I will be at my own table in a few short hours. It feels so nice to know what tomorrow will bring for the first time in a long time.  I am smiling and feel generally peaceful about taking her home.

For a while today I was daunted by a parade of people trying to make sure we had everything we needed for home.  Decisions had to be made about agencies, time lines, follow up care, pharmacies (yes, that is an "s" on there--one for TPN, one for her specialized formula--one for general meds). 

Just for a little taste of what we're dealing with, this her going home daily schedule:

Tube feed (high cal): 
8-11am: 45cc/hr
11am:  20 cc water flush
off for an hour
11:45am vent tube
12:00 pm: 20 cc flush
Repeat this cycle until midnight.
8pm-8am TPN through her central line (along with line maintenance)
Plus meds and whatever else she needs. 

Abby's central line

It's going to be a lot of work, but we are going to be HOME.

What a sweet word it is.  How grateful I am to bring my daughter home to her sisters. 

The next few months will be up and down, I'm sure.  I'm feeling exhausted today with thoughts of so much responsibility.  I am relying on the Lord to provide.  He did not bring me to what He will not see me through. I'm believing that tonight. 

My in-laws have been here caring for Emily this whole time and they will be leaving on Monday.  I'm a little nervous about being there alone with the girls, but Em will go to school.  I'm thankful they've been able to be there when we've so desperately needed them. 

I have a few prayer requests for family tonight, if you all wouldn't mind:

My sweetie pumpkin niece Avery was admitted to the hospital tonight with severe asthma.  She has been struggling for days and this was her third time at the hospital.  Please pray for answers for my sister and our Avery-bug. 

And my uncle Frank is having major back surgery tomorrow morning.  He really needs the healing touch of God.  He lives with more pain daily than any of us can imagine.  Pray that his surgery and recovery are nothing short of miraculous.  He and I share a birthday (Sunday).  I thought for a while that he and I would both be in a hospital room for our birthday. Sorry that your on your own with that one, buddy!  Love you though!

 So here we go, I'll try to keep you posted from where?? Oh, yeah...home. 

***Abby is still very vulnerable to infection, so my friends nearby, if you are sick or have been exposed to someone who is sick, we ask that you keep your distance. We love you guys...we just need to love you from a little further away for a while. The TPN puts Abby at greater risk for infections becoming serious. Thank you for loving and caring for our family so much!

Hope

I find myself saying 'we're hoping' a whole lot lately. 

We're hoping Abby tolerates feeds.

We're hoping she can go home.

We're hoping she gets better. 

We're hoping this works.

We're hoping we made the right choice.

We're hoping she goes home Friday and we're definitely hoping she stays relatively healthy. 

Today I found myself questioning all that hoping going on.  The desire of my heart is to take my daughter home.  My hope is honestly that she would survive this. 

There are so many unknowns as we travel down the road of the life that is before us.  The reality is that I could lose one of my girls.  Abby is of course in the most precarious position at the moment.  And yet she's stable.  I have this desperate need to somehow try to protect myself from the horrible finality of an end. I'm afraid of being blindsided. Somewhere in my mind I feel like if I could think of it sometimes; try to wrap my head around what life would be like without her, that maybe it wouldn't be so hard if it actually happened.  Of course, my heart holds firmly to the belief that I will never have to know that moment.   

Abby's new life line

There are days when I just hate that I live a life where those questions come to the front of my mind. 

Other days I am grateful to know how fragile it all is.  I'm thankful, not for the thoughts of losing my daughter, but for the understanding this life has opened for me. 
Today as I've questioned our decisions, and "hoped" we are doing the right thing for Abby, I've had this terrifying feeling that she's hanging off a cliff. 

I feel like I have a firm grip on her, but as she hangs I can't help but see how far the ground is from where we are--it is a long way down.  So my Mama hands are holding on to the situation as tightly as possible. My Mama heart that just won't let go.  My fear of breaking keeps me from feeling at peace with moving from the place we are in. 

The pressing I feel on that heart today is God reminding me that it is not me who holds her up.  My eyes see the ground, His grace tells me that He's got us both.  My fear binding me, my faith longing to let go.  What if I completely trusted Him and let go?  What if I trusted the choices we've made and the answers I feel like God confirmed in me?  What if I stopped trying to figure it all out for a few minutes?  Would I see my little girl fly instead of fall?

That's what faith is. Believing God for the fall as well as the flight.

Radical faith is probably more than just letting go, it's jumping with her.  It's knowing that even if we fall there are always going to be hands to catch us.  Where we are when we stop is where we're supposed to be. 

As parents, most of us have experienced fear where our children are concerned.  High fevers, prolonged illness, that quick prayer for nothing to be wrong, even when we don't think anything is wrong.  That "hope" that all is well.  Nothings wrong with that, but ultimately our hope has to be in knowing that Jesus Christ is the only hope.  His promises never fail and the future I have in Him is something to cling to on firm ground or during the fall. 

We wait in hope for the LORD; he is our help and our shield.
In him our hearts rejoice, for we trust in his holy name.  Psalm 33:20-21 (NIV)

 

An unsure heart

I came across this song today and it seemed appropriate for the way I'm feeling today. As I've typed, the words of this song have filled my heart; may they fill yours also.

I'm feeling the heavy burden of responsibility for the life of another today.  Through much prayer and heart searching, we have decided to try to bring Abby home. 

Her condition is basically unchanged from last week.  She isn't tolerating feedings and digestion continues to be a serious concern.  Jeff and I, along with Abby's doctors have come to the conclusion that it could take months for her system to work properly again.  We don't want her to spend such a long time in a hospital bed, but she definitely needs IV support to get through this. 

Tomorrow at 12:00 p.m. she will go back to the operating room for a central line to be placed in her chest.  We will take her home on TPN and slow feedings.  She will have home nursing care to manage the TPN.  We hope to move her feedings up at home and wean down the TPN after she's had some time to recover.  This is not an ideal scenario for us, but we think it's the best thing we can do for her right now.

As I've said before, TPN carries it's own risks  The doctors think she could need it anywhere from 6 weeks to 6 months.  This is obviously very complicated because of our planned move to NC this summer.  Please pray that this is over before June. 

I am struggling with feeling unsure that we are making the right decision.  Having Abby in the hospital for such a long time is tedious and at times frightening, but at least we know she has everything she needs here.  Bringing her home still needing hospital-like care is a responsibility that I do not take lightly.  Ultimately, her daily care is in my hands.  She is very fragile and having such a slow belly is nerve-racking.  My faith may be exercised far greater at home than it has been here in the hospital. 

Tonight, I lay my head to rest knowing that yet again I will trust the life of my daughter with a surgeon and all of our lives with my God.  I will trust Him because my human eyes can not see blessing from burden today.  I feel the weight of responsibility as I make decisions for my Abby that I must consciously lay down.  I trust that provision is present, so praise is lifted up. 

It's a difficult to pull praise and trust to the front line of a heart that feels unsure and afraid.  I am comforted by the number of examples in the bible of those who struggled with the weight or pain of their circumstance.  David ,who begged God to have mercy on him; Job, who spoke at length of his sorrow and heartbreak and yet trusted his God; even Jesus who prayed that his Father would take the pain he was about to endure from him, knowing that he would walk where God would send him, even into death. 

So often God asks more of me than I feel capable of giving.  Truthfully it is more than I am capable of.  It is He who stregthens my resolve, answers my many questions, and hears the cries of my heart. I pray that anyone who reads the words on this page would see "more".  A God, infinitely "more" than a girl. 

“But blessed is the one who trusts in the LORD, whose confidence is in him. They will be like a tree planted by the water that sends out its roots by the stream.

It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit.”

Jeremiah 17:7-8 (NIV)

Crazy

We have had a few crazy days, and I've jumped right on board the crazy train.  Abby did not go home today.  She will not go home for several days.  We basically had to start over with her feedings.  Here's a brief time line of the last few days:

Friday Morning:
Abby's TPN was stopped on Thursday in anticipation of her reaching her full feed goal.  Regular IV fluids had to be started last night because we stopped tube feeds several hours early yesterday.  She's having such a hard time with feedings and yet we kept pushing her to do more.  Finally Abby pushed back; Thursday feeds 650cc went in, 625cc came out (forcefully and painfully) as residual. It was a miserable day for all of us.

I'm stressed because I packed our bags with only enough left out to get through Saturday.  I'm tired because every day she struggles and we keep upping the feeds like she's tolerating them when she's clearly not.  I'm sad that simply feeding my kid makes her so sick.

Mostly I don't understand why it is that a girl who has eaten every. single. day. for 13 years suddenly needs to throw up when more than 2 ounces is on her stomach.  It's like she just woke up one day and decided not to digest anymore.  Who gets to decide not to digest food???  It doesn't make sense.

The doctors think she's just  being slow.  They say that sometimes neurologically impaired children who have a major disruption in eating have a hard time with their brains telling their bodies what they're supposed to do.  I don't know if that sentence made sense.  Her brain didn't need to tell her body to digest food for a month, so now it's slow on the job.  Any better?  I don't think I can explain what I don't understand myself. 

The bottom line is that we start again today and hope for a better day.  One day has to be the day. 

Later in the day that wasn't the day...

I had really bad day in response to Abby's really bad few days.  I definitely have a breaking point and I reached it when Abby cried for 6 hours straight on Thursday.  I woke up Friday knowing something had to change.  We started feeds as usual,at 75cc/hr  because the TPN was off and we had to try.  It feels wrong to feed her when it makes her so sick, but equally wrong to stop the feeds when I know she starves. 

When the doctor came in and finished listening to my crying-crazy self explain that I couldn't do this another day, a plan was made...again.  We pulled the femoral line.  It was a source of way too much stress.  I knew we wouldn't go home, but we decided the best thing to do was to start over.  With the femoral line out and TPN stopped we'd just have to see what Abby can handle on her own.  Feeds went from 75cc/hr 13 hours a day (what she needs calorically) to 35cc/hr for 3 hours, let her belly rest and hour and do it again. 

We worked this plan through most of the day without IV back-up.  Unwise.  She kept a little more than half of the feeding in, but not enough when paired with the large residuals the day before.  Friday night she became lethargic, bordering on unresponsive.  Her blood pressure dropped dramatically and a rapid response was called.  After blood work and x-rays they decided she had dehydrated quickly.  IV fluids were restarted (fast) and she has slowly come back around. 

Saturday:
Abby looks better than she did on Friday, but we have a long way to go.  Needless to say, the IV fluids will keep going for a while.  If this continues to go on, a central line will be the safest and easiest solution.  TPN is still up in the air for now.  Abby lost 1 1/2 pounds from Wed-Fri.  Weight is a constant concern.

She's handling the low volume feeds relatively well.  She still has residuals, but not the crying or extreme nausea.  Zofran is more helpful with what she's dealing with now.  The bad news is we have a long way to go.  Sunday we will move up to 45 for the next few days and see how she's does.  We'll just keep going until Abby gets going. 

My girls came to see us today and Jeff came in.  Abby's grandparents stayed with her so we could take the others out to the mall for much needed shoes and a prom dress for Hannah.  She got one she likes, but it's not love.  If we have more time, we'll keep looking, if not she'll look amazing in the dress she got today.  Then they all came back and visited with Abby.  As usual, it was hard for the others to say good-bye and hard for Abby and I to see them go. 

Abby's not sure why I'm taking a picture, but it's the only one I got with Hannah :)

The wonderful families at our church have provided meals for us the entire time Abby has been in the hospital.  Today I had a taste of one of them.  Oh my goodness, what a blessing a meal can be.  Thank you so much to those who have gifted our family in that way.  I cook for my kids every day.  Knowing my girls at home are being well taken care of makes doing what I need to do here for Abby easier. 

I absolutely trust God's plan for Abby and my family, but that doesn't mean I haven't felt the pain of this week.  I have struggled and cried.  It hurts--physically hurts-- to see my daughter suffering with such a basic function.  In my head, 2 ounces an hour of milk should be easy to handle.  So many things in the last 5 weeks should have been.  But they're not.

What is, is a plan that I can't see; A God I can see, and my own occasionally crazy self I wish no one would see.

Unchanging

Oh my goodness....talk of home is going on around here.  Yep, that's right.  People other than me are talking about us going home. 

She's still intermittently  struggling with feeds.  Today we had her up 55cc/hr.  Our goal was 65 this evening with 75 tomorrow.  She's still at 55 and I doubt we'll make 65 today.  She's still having a lot of residual (food that shouldn't still be there is there).  Her O2 sats tend to drop a bit and her heart rate increases, which I am beginning to recognize as a sign she's not tolerating her feeding.  We need to get up to 80, spend 24 hours with the TPN turned off, and just generally be ok.

We still have a few days to go, so maybe Saturday. 

I'm watching her like a hawk.  It is nerve racking as we are so close to leaving.  Anything that goes wrong delays our departure.  The good news is a delayed discharge at this point is probably just that.  A little delayed.  At the beginning the thought of staying here 4 days seemed like a long time.  At this point, another 3-4 days still falls in the "good" category. 

This has certainly been a difficult time.  I can't believe Abby was admitted Feb 17 for a stomach virus and here we are a month later.  That's life though.  It changes in an instant.  Not just for me, and not always bad.  Just changed.

I think we are created to move.  Everything around us evolves according to the works of His hands.  The planet swirls, the oceans never still, even our bodies are constantly in motion as cells change and blood circulates.  Maybe we are created in such constant motion simply to see that which doesn't move.  Perhaps our unchanging God allows us to move so far from where we would like to be because it is there that He waits for us.  In my life, resistance to the move from my own ideas and plans that I've held on to so tightly is where such heartache lives.  My encouragement and hope lies in what can not change.

I will stand in that hope if Abby goes home on Saturday or if she never does.  It can not change.  I grow tired and weary for sure.  Sometimes I am overwhelmed, and sometimes just plain flat-out a little bit crazy.  That's when I'm thankful that things change.  I am grateful that I don't have to stay in those hard places. 

Today is a new day!  I have this wonderful moment before it moves to be still and know He is God.  I can put my feet on the floor this morning and know that wherever my head rests tonight, the unchanging nature of his purpose can not move. 

A new day from our hospital room

"People swear by someone greater than themselves, and the oath confirms what is said and puts an end to all argument. ¹⁷ Because God wanted to make the unchanging nature of his purpose very clear to the heirs of what was promised, he confirmed it with an oath. ¹⁸ God did this so that, by two unchangeable things in which it is impossible for God to lie, we who have fled to take hold of the hope set before us may be greatly encouraged"  Hebrews 6:16-18 NIV

Moving right along

Somewhere in Abby's third week in  the hospital, I think the staff and I began to realize at the same time that Abby and I live here.  There was a sudden and dramatic shift in thinking.  I began to hear sentences from therapists like "I'll be working with her five times a week" and a child life specialist who reminded me that she "met Abby in endoscopy several weeks ago".  We all understand that we're on a long road. 

She began PT, OT, speech and music therapy this week.  She has a hospital routine plan, to help the nurses and all of us make Abby's life here as predictable as possible.  She has sticker charts and medical supplies that stay here now.  Flowers are beginning to die and balloons are sagging.  Life is moving on, and we are jumping on board.


Untitled from andrea on Vimeo.

We moved from 'she's in the hospital' (short term thinking) to 'when she's able to be home' (long term innuendo).  Social workers have been by to see how I'm coping, and the doctors are no longer discussing discharge.  They see us last because we're not going anywhere.  Even I am getting a little panicky at the thought of heading home. 

I'm generally a pretty confident mom. but I find myself calling the nurse to see if she feels warm or check her g-tube drainage.  These are things I know, but not quite the child I know.  She's different since her surgery.  Her tummy is different and definitely her habits and signals.  It makes me nervous.  It'll take some time to get to know this girl of mine again.

She is on formula feeds through the g-tube at 20cc/hr now.  We had her up to 35 yesterday, but decided she does better through the night without it running, so we switched to a higher calorie formula, which she did not appreciate very much at all.  114 cc went in, 85 came back out.  Not so good.  So back down to 20.  She needs to get to 90 cc/ hr.  It seems like very far from where we are.  The good news is, besides feeding she looks GREAT.  If she didn't need food at all, she would be ready to go home today. 

The surgeon really wants the femoral line out as quickly as possible.  There was talk of taking her down to the O.R. for a central line, but we all decided to give it a few more days. The possibility of infection in the femoral line is very real and potentially devastating.  It would not be a set back, but a start over for us.  We are just hoping and praying it works out the way we want it to. 

When I woke up my fourth Sunday in the hospital, all I could think of was how badly I wanted to get my kids ready for church and rush out the door to make it there 10 minutes late (as usual). I wanted to be at home with my husband, but we're not. He is taking care of our family, I am taking care of our daughter, everyone else is taking care of everything else.

Sarah and Emily were able to come to the hospital to visit Abby yesterday.  Hannah was sick and had to stay away.  It meant the world to me to see them here. 

Seeing Emily and Sarah just warmed my heart, and encouraged Abby to get in her chair and go down to the play room.  It went by too fast, but I laughed a lot because my wonderful Emily thinks sick people are ewww.  Hysterically, she's a little afraid of people in wheelchairs.  I really enjoyed my time with them.  I think it made Abby and I miss home more than ever.  It is comforting to know that it can't go on forever and this too shall pass. 

Abby is in a wonderful hospital.  I thank God for the entire staff.  They make us feel at home and I know they are doing everything they can to keep Abby safe.  There is a little guy down the hall from us who has CP like Abby and is dealing with very similar issues.  He has been here for weeks and is 13 like her.  He lives in a children's home for kids with disabilities.  I walk past a sign taped to his door saying a little something about him. Jordan.  Jordan who lays in his bed alone. 

I don't know how I feel about Jordan.  So many things.  Sadness that he is alone.  Joy because I believe he is never really alone.  Desire to comfort, even if he is not mine to hold.  Love for this little boy, simply because I see Emily and Abby in his face.  Surprisingly, what I don't feel is judgement.  I think of the woman who carried this boy in her body and could not carry him through life.  I hope she carries him in her heart.  I will carry him in mine.  If you think of sweet Jordan, carry him in yours.  Pray for him and the family that I so desperately wish was in that hospital room with him. 

I am so thankful for the opportunity to be here in this one with mine.  I praise God that I did not have to make the choice to walk away from my daughters and for the strength He supplies when I am so weak.  He continues to supply each and every moment according to our needs. 

"And my God will meet all your needs according to the riches of his glory in Christ Jesus. To our God and Father be glory for ever and ever. Amen."  Philippians :19-20 niv

Roller Coasters

Wednesday (3/9), started, but didn't finish...guess it just wasn't finished :)

Kids with sensory impairments sometimes use weighted vests.  They are soft cloth with actual weights sewn in.  These vests can give them a sense of security, like they're being held.  The also provide sensory input which can be comforting to some children.  Emily and Abby didn't care for them, but I always thought it sounded kind of nice.

This morning I woke up feeling a weighted vest of peace.  I started to think about what's going on and I even wanted to be concerned, but I'm not.  I feel peace almost heavy on my shoulders, not allowing me to move from it.  I can't say I've ever experienced anything quite like it. 

Abby hasn't had a great few days.  She has had a lot of trouble with her belly working correctly.  We have tried several things to get it working better and yet it remains kind of quiet.  Last night, after her rejecting just an ounce of pedialyte we vented the tube.  Nearly 8 ounces of what I've affectionately termed "belly juice" came forcefully out.  That put us back to tummy rest for another day. 

She also ran 101.5 fever last night (tues), which in combination with the tummy issues, brought the doctor and the surgeon to our room around 11 p.m.  They were both very concerned about infection.  Blood work and cultures were drawn this morning and we are waiting to see what's up. 

She ended up having a pretty good night, and after the fever came down, it's pretty much stayed down. 

My head wants to be concerned about all of these things, but my heart just won't let me.  I feel peace that I don't understand, but am thankful for.

It's a new day...3/10   9:02 am

Turns out Ms. Abby doesn't seem to have an infection...Praise God!  She still hasn't been able to tolerate anything on her stomach and it continues to have drainage.  Her belly seems to be moving a little this morning and although nausea continues to be a problem, we are hopeful she'll be able to tolerate Pedialyte today.

They did another belly x-ray this morning to see if any thing else is going on.  We are at a place where she HAS to move forward.  Tomorrow is one week since her surgery and today is 3 weeks in the hospital.  She needs to start tolerating food on her stomach soon.  They really want her off of TPN before the one month mark because of the potential for liver damage. 

Abby's IV mountain

I think today is the day.  I believe today my girl is going to feel better. 

I am having a hard time praying specifically for her.  I am praying God's will be done in this situation and  He be glorified through everyday of it.  He knows what's going on with her stomach and I trust He's working.  Beyond that, I trust He's working in all of it.  Of course this is longer and harder than I could have ever imagined and there are times when I am overwhelmed and afraid.

Later.... 3/10   8:41pm

Abby's Baclofen pump began beeping today (inside her belly).  Where's Emily with a giant EWWWW when I need it?  Her pump already looks like a bomb in her stomach, now it sounds ominous too.  We missed her pump appointment because she was sick last month.  It's beeping because it's low on medicine.  Her neurosurgeon doesn't practice at this hospital, so there was some drama about what to do.  Sometimes surgeons don't like messing with other surgeons stuff--territorial little animals, aren't they?  In the end, the peds neurosurgeon here was willing to fill the pump.  They will do it tomorrow.  That was a very stressful situation for me.  I've dealt with a whole lot, but the thought of the pump drying up and her tone flying up when her belly needs to be nice and soft and working made me cry. 

Abby started therapies today, PT and OT.  Moving her around made her nauseated and just plain sick feeling.  The doctors decided to rest her tummy the rest of the day because there was still so much draining off when we vented the tube.  This evening we opted to go ahead and give a feeding pump a try because it can go slowly and that's what she doing--going very, very slowly.  We hooked Pedialyte up at only 20cc/hr.  That's about 4 teaspoons an hour.  The first 3 hours, 60 went in and 95 came falling out when we vented the g-tube.  That's not what we hoped to see.  The only encouraging news is that it had very little color, which means it was probably just what we put in, not what's backing up.  We are continuing to try the pump through the night, venting every 3-4 hours so she doesn't get too uncomfortable. 

Her femoral line is holding up at 2 weeks old.  That's a blessing because she's still completely dependant on TPN. 

She also started with what might be common cold symptoms this evening, 99.8 temp, clear runny nose and a little upper airway congestion.  We'll see what all that looks like tomorrow. 

For tonight, my sweetie sleeps

She has a very long way to go, and as you can see from 24 hours of attempting to write a post, it's a roller coaster ride.  It changes almost constantly here.  I just can't imagine going through all of this without faith.  Life is flying around me without apparent rhyme or reason.  Jesus is the rock that I am standing on, knowing that He can't be moved.  I see his hands and feet in my church and in those praying so faithfully for Abby.  I am humbled and grateful for the faithfulness of His people on behalf of my family. 

I pray that He blesses each of you as abundantly as He has blessed me through you.

Carried

"He tends his flock like a shepherd: He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young."   Isaiah 40:11

Tomorrow it will be three weeks since Abby got sick and just another day in the hospital.  The constancy of the days after her surgery are wearing on me. 
It seems as though I spend a lot of time counting, but what else is there to do?  I'm counting the days until Abby is better, the minutes until we're home and the time as we fall further away from life as it was. 

Boring Medical Stuff:
Abby has an Ileus, which means that her intestines are sleepy from anesthesia and being moved around so much.  This is fairly common after the Ladds procedure (that corrected the congenital defect). Her g-tube drains her stomach continuously which helps with nausea, but this evening nausea is her biggest problem.  I'm not sure, but I think this is a good thing.  Maybe her tummy is beginning to work again?  Her tube is draining  a ton (250-300cc q 8 for my medical friends).  All of this means that we can't even begin to try feeding until this ileus resolves. 

She's still on TPN, because she's not eating anything.  Her Femoral line will be a race to the finish.  We have to get feedings started to wean down the TPN.  We were told the femoral line would be good for about 7-10 days, and it's 10 days old tomorrow.  It's holding up, but there's a little redness around the insertion site that we noticed yesterday.  It increased a little today and one of the lumen's clotted off for the second time last night.  They put TPA (a clot buster) in it, which worked for the second time.  It can be left in as long as it's healthy, so we're all holding our breath to see if she's able to tolerate any feedings before the line goes.  If she tolerates any food through the tube, they can run peripheral TPN until we catch up.  If not we need to consider a central line with talk of home based TPN if her belly decides to be even more difficult than it has been.  It really could take several weeks to work up to the formula volume she needs because she wasn't eating for so long before her surgery and had very little intestinal activity to begin with. 

I really like a plan and my little Abby Grace is totally not going according to plan.

Tired Mama, sick little Abby

Done with medical :)

Many people have asked about the other girls.  They are doing alright.  It's hard on all of us. 

Hannah has been very helpful, but I'm sure she'll be glad when I'm there to do what I always do, and I'm sure she'll appreciate exactly what that is more too.  She's a good kid. Watching her become the woman God created from the girl I've raised is a treasure I'll always hold dear. 

Emily is doing much better with Grandma there to fill in the gap.  She needs that consistency and someone to watch her health closely also.  She needs a lot of reassurance and she getting it now.  I miss her, but I know she's alright and that's all that matters right now.

My sweet Sarah called me in tears tonight.  She just wanted to know when things would be normal again.  I could completely relate to my girl.  I want to know too.  "I just want you and Abby home, mom."  She cried tears that I can't.  I just can't even let myself think about home when I have to have my whole heart here in this room with Abby. 

It's funny how the heart of a mother can immediately be completely consumed by the distress of her child.  In that phone conversation, all of me was with Sarah.  For just a few minutes, I listened to her cry and did what I could to make it better without being able to put my arms around her.  She's only 10 years old, so three weeks away from Mama is a long time.  Sarah, when your older and you read this, I hope you know 3 weeks away from my sweet Sarah is a very long time for me too.   I've prayed for you everyday as God shapes your little heart through this trial, just as He's shaping mine.  I trust Him with you when I am not.  I hope you do too!

Obviously, this is a difficult time for us.  Knowing that Abby is going to be fine and this will eventually pass is helpful, but it still feels like a distant dream.  It's coming more clearly into focus, but not there yet. 

Abby and Daddy resting

It's very difficult to be purposefully and positively faithful when all I can feel is tired.  I took a walk today while Jeff sat with Abby.  I feel like a slug in this room.  I barely move except to care for Abby.  I saw the trees swaying in the wind from our window and suddenly understood why prisoners run.  I just had to get out of here.  Thankfully I could. 

I keep thinking of Paul in prison.  Writing letters to the churches and staying faithful in prayer and encouragement of others.  He didn't know his fate, and yet he was solely focused on what God was doing through him.  I am reasonably sure that I'm leaving this hospital alive with Abby and I struggle to focus on faith. 

I'm no Paul, of course, and my faith is always with me, but I would love to get to the place personally where even exhausted and afraid, I would decrease that He might increase.  Instead, I find myself focusing on my loss and praying for a glimpse at God's plan for us. I've said it before, but it bears repeating: faith can be very hard work.

Tonight, I am going to bed thinking about the words of Isaiah:  "He gathers the lambs in his arms and carries them close to his heart."  Oh, I hope so.

Sometimes friends, faith is about the road we walk, sometimes it's about allowing ourselves to be carried. 

Abby Grace

Abby is out of surgery and doing well.  She came right back to her regular hospital room, which after two weeks feels a little like home to us.  I'm glad she's here where she's most comfortable.  She's in quite a bit of pain, although the morphine is doing it's job fairly well.  The doctor was able to straighten out the small bowel, remove her appendix, do the NISSEN, and g-tube.  She didn't need a hernia repair.  He took a look all around and everything looked pretty good. 
Her small intestines were of course on the right side of her body.  Her liver and gall bladder were shifted to the left.  This is probably because of scoliosis.  The curve in her spine that contributed to the crimping in the intestines is moving her organs around a bit.  There is nothing that needs to be done about that surgically, but as Emily would say:  Ewww. 

As one might expect, we didn't get much sleep last night.  This morning was a tearful one for me.  Whenever anyone sees a mother crying as her child goes off to surgery, they expect that mama is worried about the procedure.  I wasn't.  I knew it was only a few hours and I couldn't control anything that went on in that room.  It's a time for complete faith. 

I am just broken hearted over that darn G-tube.  I know in my head it's not a big deal.  Emily has one, I deal with it everyday.  I've just worked so hard over so many years feeding Abby.  Our days are filled with "did she eat enough?"  or "she's got to drink more!"  I should feel relieved to have some help with all of that, but all I feel is sad.  It's a loss of yet another part of her.  It felt normal and right to feed her.  As frustrating as it was sometimes, it's hard to let go. I know I can still feed her by mouth, and I will if she will, but the tube.  The dreaded tube is there. 

She's kind of fussy, so I'll go and cuddle away some of the pain.  I am ever grateful for the goodness of the Lord and his provision for my daughter.  I'm sure he'll carry me quickly through any lingering doubts I have about the choice we've made today. 

Abby has a week or so of recovery ahead of us in the hospital and then we begin to recover at home, so please continue to pray for her as you think of her. 

Grateful and Sad

Abby got lobby privileges yesterday.  I thought she would enjoy a few minutes off the unit since she'll be here for several days after her surgery, but she didn't like it much.  She felt really good before she went down and then she got nauseated.  She came back to the room and needed pain medicine.  I was disappointed it didn't go better.  I think I just keep hoping she's going to suddenly look like my Abby, and she doesn't. 



Abby in the Disney Lobby



We've been here for two weeks now.  It seems like forever and yesterday at the same time. 

When we found our answer to Abby's problem I was so relieved.  I still am, but I'm also concerned. 

I feel so many things tonight as Abby falls asleep on her tummy for the last time.  This time tomorrow night she will have a tube sticking out her belly.  I feel a strange mix of gratefulness and sadness. 

I'm so thankful my girl is on the road to getting better.  She really needs this tube and God certainly answered my prayer to make it abundantly clear.  She obviously needs surgery for the congenital problem, so I'm thankful she has something that can be corrected.  I'm very thankful we're in a hospital where Abby is getting such good care.

I'm also sad.  I'm sad that our lives have changed yet again in a single day.  I'm sad that she won't eat and needs a tube to stay alive.  My heart hurts because my little girl hurts.  Abby and I are both tired and weary.  It's been a hard road. 

From the moment my stubborn, sweet, precious, Abby came in to the world, she's traveled a hard road.  Life isn't even close to easy and it's even further from what I think is fair.  I used to wonder how a powerful, loving God could allow any of his children to suffer.  How is this possibly love? 

The honest answer is I don't understand it.  I have no idea.  But I believe with my life, and the life of my daughter that God knows what I don't and loves in ways I can't comprehend.  I believe that He loves Abby in ways I am incapable of loving her. 

“For my thoughts are not your thoughts, neither are your ways my ways,” declares the LORD. “As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.” - Isaiah 55:8-9

Tomorrow, with tears in my eyes I will gently place my sleeping daughter not in the arms of a doctor, but in the arms of her God, believing He will gently place her back into my arms exactly the way He wants her to be.  I will trust that whatever the day brings, His love will never fail. 

An Answer!

Oh how thankful I am to write those words.  Abby was able to keep down enough of the barium to see her intestines. Thank you Jesus!

We found out that she has a congenital intestinal malrotation.  Her intestines didn’t form correctly early in development (between 6-7th week). The small bowel should loop back and forth horizontally in her abdomen. Abby’s is all on the right side of her abdomen vertically. This has to be surgically corrected.


The doctor thinks that she got the stomach virus, lost weight quickly, and now has positional intestinal crimping. She’s so thin and her spine curves, so as she turns onto it she’s could be temporarily crimping the intestine and as she’s repositioned it straightens out. Most children with intestinal malrotation are diagnosed and corrected in the first year of life. Abby somehow made it through 13 years with it.

She’ll have surgery Friday morning to correct the problem, remove her appendix as it’s probably not formed correctly, and have a g-tube place with a NISSEN (reflux repair). He’ll take a look at the hernia and see if it needs anything or not. Then recovery can begin.

She’ll need to wean down off of TPN and the doctor anticipates a week of trying to get feedings going. This could take longer because she hasn’t eaten in so long. There are many unknowns at this point but the bottom line is we have to fix her tummy to get her well.

There are of course many potential complications. The surgeon isn’t worried though and thinks he should be able to do it laproscopically and have a 3 day recovery. The intensivist said surgeons are good at what they do, but Abby will be more complicated than that. She cautioned me about the amount of time it might take for Abby to be ready to go home.

She needs to get through the next 48 hours as healthy as possible.

We of course are praying for her and as I’ve said before, see this as God’s provision for our girl. We believe He allowed us to see this problem at this time and is already caring for Abby.

I am overwhelmingly relieved for an answer. My mama heart knew something was wrong, so that same heart is still concerned for my girl, but grateful too. We are so thankful it can be fixed and she shouldn’t have any other problems from it.

I appreciate the prayers for Abby to be able to tolerate the barium. It was truly answered by our merciful God who knew I was nearing the end of my rope. My Abigail needed answers and this explains sooo much! I know you’ll be praying for her on Friday and until then to remain free from infection or any other complication.