Answers

I'm sorry for my long break.  It's been hard for me to think of what to say.  I feel like you've all heard it all before.  She's still sick, I'm still tired and trying to make sense of it all. 

We did get some answers from Abby's recent testing.  We fed her six hours through her stomach as sensors recorded the contractions of her intestines and belly.  She also had an endoscopy.  That showed that all of the previous ulcers had healed (Thank God!!).  Her NISSEN looked good and although she had some minor irritation in the part of the intestines right where the stomach empties, she looked generally good.  They took several biopsies, but that is a HUGE improvement from last time. 

As far as the other test goes, it could have showed that she had weak contractions of the intestines that didn't push food through effectively or possibly uncoordinated contractions that were equally ineffective.  What she had was very long periods of inactivity (which explained the swelling and pooling of food we see) but when it did work, it was fairly coordinated and likely strong enough.  That led to one very unpleasant answer.  This is neurological. 

We didn't want it to be that.  Her brain is simply not communicating with her belly consistently.  That is why she has long periods of not moving food through.  Then when she does send the signals, it seems to know what to do.  The Doctor said that it's a part  of her autonomic nervous system that controls it, and there is nothing we can do.  We are going to try to come up with a combination of medicines to make her less nauseous.  She also got a new G-J tube before we left.

When she left the hospital, she was so sick and pale.  She wretched and gagged.  We went to Virginia for the weekend to have Christmas with my family (the first time in many years).  I was so excited, but Abby was so sick that it was hard.  I wasn't sure why she was having such a consistently hard time. 

When we got home, I called the Dr. about Abby.  I was having an extremely difficult time getting her feedings in her.  She had formula in her stomach--which shouldn't be there and needed frequent venting and constant nausea medicines.  I still couldn't get her comfortable.  She looked awful.  The agreed to take a look at the tube placement.  We went back to the hospital on Wednesday.  Her J-tubing had looped in her stomach irritating it.  It also  wasn't far enough into the small intestines allowing her food to back up in her stomach.  They were able to reposition the tube.  She felt so much better.  She's still sick, but not even close to what we were dealing with.  That was definitely another answer.  I was so scared that she was just suddenly worse and there was nothing we could do for her.

Emily has had several seizures in the last week.  One as soon as we got to Virginia and sat down to lunch with my family.  She had 3 yesterday.  One of them lasted about 4 minutes with her hands thrashing around and her head turned to the left.  It was the first one I've seen like that.  I think we may need to adjust her medicines. 

Christmas is only 3 days away.  I can't wait.  I'm so excited to relax and do something normal.  I can't even tell you how happy I am to think about sitting with my kids as they slowly open presents.  I used to worry so much about what I would give kids that couldn't do what others do. 

This year, I've had a really hard time picking presents for them.  They are so much older now, and it was hard to buy for them.  And I didn't care. I didn't get cards out, but that's okay too.  What I will do is sit with my kids and watch their little hands tear paper.  I will think about a baby born more than 2000 years ago.  The child that came so that I can be sure that no matter what we face, our hope is in Him. 

Merry, Merry Christmas, my friends.  I pray that each of you holds in your heart only what is important as we celebrate the birth of our Lord. 

Random Stuff

Yay!  Finally, Christmas lights shine throughout our house.  That's a huge accomplishement--trust me!  It's my favorite time of year.  Now we even have the cold to go with the season.  It's much colder than I remembered and bundling kids into coats and wheelchairs isn't exactly easy, but it's sweet none-the-less.  I'm doing everything in my power to just enjoy this time and not worry, but that's not easy either.

My tree... I love blue!

 

~I took Abby for a gastric emptying study Thursday. Sounds fun, right? I've been dreading it for many reasons. First, she hasn't had anything on her belly for months now and this test required using the g-tube. Second, it's long. Four hours long. The first hour Abby had to lay flat under and x-ray machine relatively still. Then, she could get in her chair, and have x-rays every hour for the next 3 hours.

She was a trooper. It wasn't nearly as horrible as I expected. I think it will show what we already know--her belly doesn't work. We put 2 ounces in and it didn't seem to go anywhere fast. I couldn't tell for sure, but it seemed to change very slowly.

~She will be admitted to the hospital overnight December 14th for a specialized test that will show more about the way her intestines contract and food moves through. She will get a new g-j tube then and also have an endoscopy. We are really praying that we are able to understand what's going on with her enough to help her be more comfortable.

~She's been having a lot of belly pain lately.  I'm not sure why.  Her x-ray showed what it always shows.  "Moderately dilated bowel with no apparent obstruction."  It's very difficult to focus on the good things in life when she's so sick. 

Abby, feeling a little better one day :)

~We took the girls to the library today and then to dinner Saturday night.  It's the first time we've taken them out in a while.  We went to Golden Coral--before any of you throw up, it's Emily's favorite place to eat.  She is all about a buffet!  Abby used to love it too.  She kicked and got all excited when we told her we were going, but when we were there, she just seemed sick.  She acted like she wanted to eat, but couldn't even think about tasting food.  I still think it's sad.  I miss her eating with us. 

~The nutritionist we saw gave me information on  a blended diet for post-NISSEN, g-tube fed kids.  It was supposed to reduce nausea (in the study it did an average of 76%).  It's formula based with stage 2 baby foods, infant cereal and I added her pro-biotics.  It has to go in the stomach and not the j-tube, but I decided to try it.  I gave her 15cc (about 2 teaspoons) yesterday.  BIG mistake.  HUGE!  Oh my, that poor girl was sick as a dog.  I tried to pull it back out, but she gagged for almost an hour.  In the end, that 15cc meant she lost about 90cc of fluids.  Right now, that's a big deal for her. 

~I'm tired of talking about sick bellies.  I write it because I want to remember what we went through, and because people ask me about Abby a lot.  Every time I sit down at the computer, I wish there was something else to say, but there isn't.  This is what we do right now. 

~I've been trying to put into words what all of this has done to/taught me spiritually this year.  As I write, I find there are no words.  Every minute of the day is filled with different all consuming emotions.  Sometimes I am angry--just so angry that I have to wonder how long I will have with her.  Sometimes I am so sad and hurt for her, and for our family.  Most of the time I feel quiet--and if you know me, you know how different that is!  There are no adequate words for what I see everyday or the way that feels. 

~In January, they will be 14.  Fourteen years of laughing and loving--heartache and sorrow, fear and uncertainty; woven intricately into one beautifully terrifying fabric.  We are each wrapped in it, even clinging to it.  It's all we know.  

~I am learning to understand this journey of faith.  Trusting what I can not see this year has been process of daily (sometimes moment to moment) conscious decisions to believe.  In my heart of hearts I always do.  I just have to remember that we are not alone, and however the Lord chooses to lead, we will follow. 

Thankful

Thanksgiving week-- like everyone else, I stayed busy getting ready.  I usually LOVE this time of year--I still do, but in a different way.  I was so happy to see my family to spend a few days cooking and eating and just enjoying being together.  But this year has been very hard and nothing feels the same as it did before.  Even when the twins were diagnosed I didn't feel the weight of it each day that I do now. 

Something about walking this road for so long only to experience the year we have has left me feeling a little disconnected.  I miss my routine and our church.  It helped to center me in a way I'm struggling to find now.  We've tried a few churches and decided whomever wrote Goldilocks was probably church shopping at the time.  This one's too small, that one's too big, another one just doesn't feel right, and I'm desperate for just right.  I know it's out there, so we'll keep looking. 

Abby had an appointment with her GI doctor the day before Thanksgiving.  I really needed some help with her because her nausea was so much worse and I didn't know what to do.  We also met with the nutritionist who could not have been more helpful.  Abby lost a little more than 2 pounds in the month since we last saw him.  That was cause for concern.  We decided to try a different formula (again).  This is one I've never heard of.  All of the proteins are completely broken down, so she should only have to absorb it.  It only comes in 1.0 calories (she's on 1.5 now so she needs less volume).  She'll be getting less calories for a while, but the hope is that she'll tolerate it better so we can increase the volume.  We are also upping her IV sugar from a D5 to D10.  It's not much, but it offers a few more calories.  We are close to needing TPN again, and just trying to avoid that. 

Everyone else is doing well.  Hannah was home for a little break, Sarah is good and Emily is healthy.  I am beyond thankful for those things. 

This year, I'm thankful that our family is back together and we are moving along.  There are always things to be thankful for.  It's not the automatic smiley thankful for all that's good in our lives.  It's looking around knowing what could have been, and what might still lie ahead and experiencing gratitude for simply being here; for having all of my girls and my husband with me around the table, even if Abby couldn't eat.  It was gratitude for the 12 years she did eat, and as I write tonight, gratitude because not even once that entire day did I wonder what next year would hold. 

I hope you all had a wonderful Thanksgiving, and I hope you are all truly grateful for the blessings in your lives.

Hanging

I didn't realize how much time had passed since my last post. 

Listening to Emily continue to cough in the next room made me think of writing.  She's better, depending on the day, but continues to have a lot of congestion.  She runs a fever on and off, but generally has a little more energy than she did.  She went to school two days this week. 

Abby is a puzzle.  She seems to be overall a little better, but every time I go down on IV fluids she runs a fever.  It is frustrating.  Some days I get more liquids in her, but the last few days she has been so nauseous I've barely not gotten all of her feedings in.  I've decided not to mess with the fluids anymore until after her next doctors visit.  I need help with it.  I don't know what to do.  I want that line out before she gets sick again, and knowing it's not a matter of it happening, just when, is frustrating. 

I'm looking forward to the new year.  I don't know if it will be any different, but I will not miss 2011.  It has been tough. 

I'm kind-of sick of living in the world of disabilities.  I love living in a world with my girls, just not all the problems they come with.  I keep wondering what normal families do with their time.  If I didn't have to get up with kids several times a night and actually felt rested, what would I do?  If Saturday morning, I rolled over lazily in bed and realized it was after 8am, and I didn't immediately panic and wonder if something was wrong--how would that feel?   What would it be like to meet my husband for lunch because our kids were nearly 14 and we weren't so tied down?  How awesome is it to think of a vacation without first researching about accessibility, wheelchairs, side-rails, access to hospitals, and a million other details?

I know from experience that it doesn't help to ask those questions.  There are no answers and it only makes me sad for my kids and myself.  No one of us should live in the land of what-ifs.  The land of what is has to be my focus.  It's the only thing that helps my girls. 

This is very hard and Jeff and I are both tired.  We have no helpers here because we lost medicaid when we left Florida.  There is a five year wait here for it.  The girls will be adults then, if they make it to that point.  In trusting that God knew what He was doing when we came here, I have to trust that He will either supply the help we need or continue to equip us to care for them ourselves. 

I still love being so close to family and have been thoroughly fascinated with the amazing colors of fall. .  It's great to see them so often.  We are having a house full for Thanksgiving and I can't wait.  I'm just praying the girls are healthy and not in the hospital.  It would be wonderful to leave all of this behind for a few days.  n

Still hanging on is the best I can do :)

Not so fast

Emily had a much better day yesterday.  I was so relieved that her fever seemed to stay down, and though her cough still sounded bad, I felt a little better about her. 

I took her to the Dr. just to be sure she was on the up swing.  The Dr. said she had bronchitis and gave us an antibiotic.  Emily came home and ate dinner and really seemed okay.  I even considered sending her to school today.  I had a little unease about that because she had been pretty sick on Wednesday. 

Abby had an appointment for wheelchair repairs that I couldn't miss today, so I decided to find a sitter for Em.  Luckily, Jeff's aunt was available.  Just as I was feeling like I had it together, uh, not so fast.

All of the sudden, like a train hitting, her color changed.  She started coughing non-stop.  She was gagging horribly and her fever jump to 102 out of nowhere.  It was like that great day never even happened.  She was breathing fast and grunting to get the breath back out.  I held her, turned the humidifier on high, rubbed her chest with my favorite Tai fu oil (THE best stuff) and wondered if I should just take her to the hospital.  Then she would cough so bad that she seemed to have trouble taking her next breath and made me wonder if she needed an ambulance.  She'd manage to pull that breath, then do alright for for a few minutes before it started again.

Then she settled down for an hour in my arms.  All night she cycled through horrible gagging, then seemingly never ending coughing spells.   Motrin brought down the fever, Zofran helped not at all  with the nausea.  I couldn't give her anything for the congestion because it's contraindicated with her seizure med.  She did have a pretty good sized seizure after we left the Dr.'s office---that should have tipped me off, but it didn't. 

I was up all night holding her.  Her cough loosened up as the night wore on, but that just gave it an awful croupy sound.  The nausea was out of control.  I'm going to call the dr back about that.  I wonder if the antibiotic set off the tummy. 

I have a horrible headache today, it's raining, Abby still has an appointment, and Emily is finally asleep at 8:13am.  I'm sucking down coffee, taking Motrin, and praying this day gets better!   

Today is one of those days when I will need what I just don't have.  Lord, fill in the gap and help me to do what I need to for my girls today.  Amen!  (sometimes short and sweet is just fine :)

Emily

Quick post, just because I'm trying to keep up with my own life :)

Emily ran 102 fever all day.  The poor little thing coughed until she was nauseous, but she rested in her recliner and watched TV as predicted. I think I managed to keep enough fluids in her, but time will tell.  I made her a Dr. appt for tomorrow, so hopefully we won't be sent to the hospital.  Every time we go there, they send us to the hospital.  That's the problem with typical pediatricians.  My girls will always be the most complicated kids they see.  Our old critical care guys see a lot worse every day, so usually my girls are fine to stay home. 

I've always known we were blessed with that set-up.

Sarah came home from school and asked about Em.  I told her what her fever was, and poor Sarah just got a stricken look on her face and then said  "how soon before she goes in the hospital?"  I felt so bad. I hate that she automatically thinks what I automatically think.  We're both right, but seeing her little face that hasn't quite yet learned to grin and bear it made me sad.  I keep thinking of Romans 3:3-5.  That sweet girl is going to have tons of character!

Abby's hanging in there, thank you God!  I have my in-law's on stand-by in case Emily needs more than I can do, so I guess we're as ready as we can be. 

Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance;  perseverance, character; and character, hope.  And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.  Romans 5:3-5 (niv)

Cold

I'm sitting in my room watching Dancing With the Stars listening to Emily on the monitor as she coughs repeatedly. 

I know we're in a new area and that the girls would get exposed to all the germy's that live here.  I thought I was prepared for it, but ahhhhh maaaaaannnn!  She has a tight cough and is running a little fever (100.8).  I'm whining.  I'm not particularly worried, but I just don't want another sick child.  Even for a few days.  She probably can't go to school tomorrow so I'll have them both home.  Ewwww. 

I was just thinking about how much I need a break today.  Jeff's aunt said she could come by one day this week to help out with Abby.  I wondered what I should do with a few hours.  Should I nap?  Should I clean uninterrupted?  Run errands?  Do nothing?

Oh, I know!  Take Emily to the Dr.  Typing that makes me laugh.  Honestly, Emily is easy sick.  She rests and relaxes, and if she manages to stay out of the hospital it's not so hard. 

Abby's been much better the last few days.  No crying and fussing, but horrible nausea today.  She had that awful icky color to her skin.  No fever though.  I didn't run her feeding last night because she was so sick, but I got the whole thing in her today.  No matter what else is going on, without the crying, I'm alright!

So here we go again.  Short, easy cold or yucky hospital stay?  I vote for short and easy :)

ups and downs

I literally have 4 posts in the "draft" phase from the last 2 weeks.  I start writing in the morning and by night time it's not true anymore.  Some days are good--one post is even about 2 really good days in a row for Abby.  In one she actually drank 6 ounces of juice over the course of a single day.  I was so excited about it, but the post was about being afraid to hope sometimes because the let down can be so hard to take.  Before I published, she was up that night for 3 hours with belly pain and gagging. 

I have had some of the best days we've had since this mess started and then I've had TERRIBLE days with Abby.  She ran a fever on and off all week last week.  Some days it was 101.5, other days below 100.  I've been a nervous wreck.  I took her to the doctor 10 days ago for being very irritable and fussy.  The pediatrician didn't like the way the line site looked, so she sent us to the hospital.  We spent 7 hours in the ER waiting to see the surgeon who decided the line was fine, but they drew blood cultures anyway.  We barely made it out of the hospital that night because her white count was 7.0 and the irritability made them concerned she had something brewing.  A count of 7 is HUGE for Abby.  In the end, I agreed to come back if anything changed and if the cultures showed anything. 

She fussed and cried all day Friday and Saturday which is about to make me lose my mind.  I can't take all this crying.  The hard work, the worry, the struggles, the exhaustion...all of it....I can handle, but not when she's screaming at me like some-one's killing her.  It's part CP, part Abby, part just plain old temper that makes her do that.  The part I don't know about that scares me is wondering if something else is wrong.  And of course...the fever!  Just when I was about to take her back to the hospital, it was down today, and she was nice all day. 

It's been tough and I'm not going to lie, I'm tired.  I'm trying to find a place in all of this that feels comfortable and normal to me.  I honestly don't know where that is.  Even now as I'm typing my cat keeps attacking my hands.  Apparently absolutely nothing is easy. 

One thing I did realize this weekend was that I hadn't opened my bible in a while.  I was really struggling with the Emily and Abby screaming and began to pray.  I was feeling very much alone and wondering where God is in those terrible moments when I want to give up.  I was suddenly aware how little time I'd spent with Him lately.  I'm reading mindless books, watching silly TV and hoping that God would just fill that gap for me.  He meets me where I am, but He also needs me to look up from what I'm doing and take what He offers.  I opened my bible this morning and instantly felt peaceful.  I read about the faithfulness of God as we are faithful to Him. 

I have to stop now or my there will be nothing left of my hands, thanks to the kitty.  As usual, we are taking this life of ours day by day. 

A few highlights from the last few weeks:

Chocolate Cheesecake pop at the Lexington BBQ festival (GOTTA Love NC~!)

I have more, but they won't load.  So I'm going with it--hopefully I'll have time for a picture post soon. 

Please pray for Abby when you think of her.  Pray she stays calm, happy, and feels well--and NO fever.

Hard days

I spent yesterday in the ER with Emily.  Apparently she has a stomach virus, and it just wiped her completely out.  I took her to the pediatrician who sent her straight to the ER.  She had x-rays, CT scan, blood work, etc.  I think we were all looking for a very serious problem because she looked so awful, but there wasn't anything there.  Her white count was fine, so she just got fluids and we were able to come home. 

It was such a huge relief to walk back out of the hospital without having to stay.  She perked up some today, so obviously the fluids made a big difference.  She slept for about 24 hours and I started feedings back again today.  She's still a little weak, but not nearly as bad as Sunday when she could barely hold her head up.  Finally, a normal little virus!  Not that I want sick kids, but I'll take normal anywhere I can get it.

Abby is another story, as usual.  I don't know what in the world is wrong with that girl.  She is making me nuts though.  She has fussed, cried and been generally unhappy for the last two days.  I don't know if she's feeling bad, if she has Em's bug, or if she's feeling good enough to actually throw a fit.  She's not sleeping well, doesn't want to help me with house work like she normally does, and she doesn't want to play.  She doesn't have a fever and she isn't more swollen or nauseated than usual, so I don't know what to think.

All I know is that I am really, really tired of being around her right now.  That in itself produces a huge range of confusing emotions.  She's not doing very well and no one knows how to help her.  I don't know how long I'll have her with me.  Some days she seems like herself and I can't imagine that she could die.   Some days I can't even begin to imagine she could recover.  Then there are days when I want to throw in the towel and just be done myself.  I am so tired of taking care of her, especially when she is screaming at me. 

I have had several conversations with God about it.  I don't know how to feel.  I think I want all of this to end without losing my child, so essentially, I want a miracle.  I want her to wake up and walk to my room tomorrow morning and say something ridiculously casual like "hey mom...why are you still sleeping?" 
She won't though.  She'll cry until I come into her room and turn her over, place a pillow between her knees so she doesn't rub them together, stop her IV, hook up her feeding, medicate her for the nausea I know will come and dress her for the day.  I will put her in her chair and pray that we go back to sleep in our own home that night. 

Days like the last few with Emily sick and Abby crying all day and night make me realize how fragile this little set up I have going is.  If nothing moves outside the lines I can handle it.  I can take care of the girls, the house, my marriage, my other children, and whatever else I do in a day.  Living outside of those lines sends me  for a loop.  I don't like it.  It makes me wonder where in the world God is in all of this.  I desperately want Him to step in and fix this.  Fix something.  Help me through this.  I'm sure He is, but I can't see it.

I just have to continue to choose to believe that He is with me because He says He is.  I choose to believe that He loves Abby and me when I can't feel it, and spend another day trusting a plan that doesn't make sense to me.  Noah built an ark without a drop of rain, right?  It doesn't do any good to try to build the boat when the water's up to your neck.  I. still. believe.  Especially on hard days. 

I know that my redeemer lives, and that in the end he will stand on the earth.
And after my skin has been destroyed, yet in my flesh I will see God;
I myself will see him with my own eyes—I, and not another.
How my heart yearns within me!  Job 19:25-27 (niv)

Skunks

Jeff started his day with Emily yesterday with her customary viewing of Clifford the Big Red Dog.  She likes Clifford and routine.  Both of those things should have kept her right on track for a good beginning of a school day. 

It wasn't though.  Emily was edgy and continuously threw her hand into the air, as if she was afraid.  Jeff wasn't sure if she was having some new, strange kind of seizure, but decided to hold her in the recliner until her "case of the sadies" passed.  Then there it was.  Nearly 20 minutes into the episode; the reason for the erratic behavior.  A skunk jumped out of the bushes at Cleo, and Emily went nuts! 

Emily has a well documented fear of skunks.  Even cartoon ones.  They often point their offensive bottoms directly at the screen (and consequently, my child) and "defend themselves". 

Poor, sweet, Em.  She couldn't say "hey Dad!  This episode scares me because it has a skunk".  She had to bear through it because we didn't know any better. 

Emily is otherwise doing fine.  She's actually doing great.  We took her to the Dixie Classic fair this weekend and she had an awesome time.  She is totally my roller coaster girl. 

We've had lots of visitors now that we're in NC.  We are so close to family that we have people coming by often.  I love being able to see people and let the kids get to know with their family again.

my mom, my aunts and my girls!  SO much fun :)

I'm missing my church family a ton right now.   I want to just get up and go to church on Sunday, and we don't have a place for that yet.  Abby has been so sick that it's tough to find somewhere, but I'm confidant that God already has it worked out. 

A few pics from her last hospital stay:

After her Broviac was put in

Getting her hair washed!  This thing was so cool.

feeling a little better

Speaking of Abby, she's still hanging in there.  We are finishing up the IV antibiotics, which was so much more work that I realized it would be.  It was also very stressful every time I hooked it up.  Each time the line is accessed is an opportunity to introduce bacteria, so it was difficult.  I'm just thankful it's nearly done.  It was my "skunk".  I know the possibility of infection is out there and waiting for it to jump out at us has me edgy.   

She's running a low grade fever, but we were able to meet with a GI who specializes in motility.  He said that any kid off the street with Abby's set of circumstances would be sitting where she is.  Dysmotility is a complicated and difficult problem to overcome.   He is going to put her in the hospital in a few weeks for some specialized tests to help determine the exact problem.  He gave me tons of information, but I think he's our best shot at making her more comfortable. 

So that's what's going on with us.  Emily and I are still concerned about our own respective "skunks" lurking about, but we are both trying to relax a little and enjoy what's in between. 

Abby

Quick update:

Abby's home and doing alright.  She's still on IV antibiotics and we have tons of Dr.'s appointments coming up. 

The line went in fine, and I'm over not wanting it.  What's done is done. 

Thanks for keeping her in your prayers!  She is a blessed little girl. 

Lines

Abby's in surgery right now getting a new central line.  I just didn't want it.  Jeff was here with her last night and signed all the consents.  I didn't realize he had done that, but I'm glad he did.  I dreaded signing it again as if I'm some how agreeing to what's going on.  I'm not.  I know she needs it, but I seriously considered just taking her home and working on feeds without it. 

I know that it's a plan that won't work, but I want it to just the same.  I want this to be over for her.  I want it to be over for all of us. 

I spent Saturday night and most of Sunday at home and Jeff stayed with Abby.  It was so nice being in my own house without having to think about feedings and fluids.  Emily woke up after 8 am (that's sleeping in :), but she woke up quietly and sweetly.  I fed her and gave her meds, then laid back in my bed and drank my coffee while she watched cartoons.  It was so easy. 

I got up, cleaned, unpacked a few boxes, and organized the house a little.  I walked around completely relaxed for a while.  And then it hit me like a ton of bricks.  I want this.  I want to relax in our home.  I want Abby to feel good.  She doesn't though.  She really doesn't.  I'm afraid that her little body can take much more than I think it's fair to ask her to.  I feel guilty for wanting it to be over.  I feel guilty for putting her through so much.  I don't want to feel any of it. 

If all goes well, we'll take her home tomorrow on IV antibiotics and fluids.  Her feed rate is back down to 30, so yet again, we start over.  We are still trying to keep her off of TPN, and so far, so good. 

So a new line it is.  Lines, lines, lines.  Tying us all to this situation.  Eventually it has to break, right? 

Update:

Abby's central line came out last night.  The infectious disease doctors all got together and decided that the yeast in the line was too dangerous to continue with.  In the end, I was fine with it.  She wasn't going to be ready to get rid of it in two weeks, so there wasn't really any point in hanging on to a line that was making her sick. 

She did great in the OR, and surprisingly, the biggest complication was getting a peripheral line in.  It took them 6 tries to finally get an IV in her wrist that infiltrated this morning.  The nurse here got one in her hand, but she's a hard stick.  Hopefully this one holds until Monday.  She's on the schedule for another broviac then. 

She had a small bowel follow through study today.  I'm anxious to see exactly what the problem is with feeding her.  Immediately, we noticed the food backing up toward the stomach.  She also has abnormal anatomy because of the malrotation.  We hope GI will help us to figure out what to do next.  It might just take more time. 

I continue to feel peaceful and praise the Lord for his provision.  I had high hopes of writing tonight, but I'm exhausted, so I'm heading to bed.  :)

Still breathing

I'm so glad I named my blog Just Hang On.  I couldn't have know how perfectly it would reflect our family.  Hanging on to our faith, our hopes and dreams and each other.

I'm writing tonight from my own house. Jeff spent the night with Abby at the hospital and I came home to Emily and Sarah. Sarah had a tummy bug last night and stayed home from school today, but she's fine now. Emily is doing well. She's happy that I'm here, but she's also happy that Jeff is here every night with her. Being together makes it so much easier for us when Abby is is sick.

She's doing remarkably well considering all that's going on in her little body. It is truly amazing how sick someone can get and still recover. She's fighting this and responding well to antibiotics. She actually didn't have gram + rods like we thought with the second culture, so that was good. As the bacteria grew out they realized it was the same bacteria they originally found. She had it in her urine too. The yeast was really there and will likely be our biggest problem. The infectious disease doctors told us there is only a 10% chance that we can get that infection under control with the line still in.

We are trying though. She's handling her feedings rather abysmally, making hopes of not needing the line slim. We are repeating blood cultures daily. If she has two negative cultures we can keep the line and go home on antibiotics for a few weeks. Because the chance of the yeast infection recurring in the line after stopping treatment, we are only buying the amount of time she's on antibiotics to work on feed rates. Then the line has to come out.

If we can't get negative cultures by the weekend, they have to pull the line. Apparently sepsis with fungus (hate the word) can be more serious than bacteria because it's so difficult to treat. There is also a very real possibility that it could infect future lines. There is much to think about and pray about. We need answers and wisdom as we move forward.

I feel peaceful right now. There's not good reason for it, other than a gift from God. I really needed it, even for a few hours. We're all still breathing, and remarkably, still hanging on.

devastated

Did I say I would be devastated if her line culture was positive? Well, I am. Her line was positive for a different bacteria (gram + rods) and yeast. We are repeating the culture, but will certainly loose the line. Will update more later. Abby still looks good, so thank God for that. I am...I don't even know. I feel like devastated is too strong of a word. It should be reserved for tornado victims, but it's the only word I can come up with for what I feel. It's devastating to go through this again.

:))))

Okay, better day. 

Abby's still pale, but no fever.  She's more alert today, which always helps with feeling better (I mean me).

I think I have good news.  She definitely has a line infection.  She grew enterococcus--which is responsible for 1/3 of all line infections.  At least it's not a weirdo-no-one-ever-gets-that infection.  In true Abby fashion, her white count is down below 3 today.  So, the good news part!  She seems to be responding well to the antibiotics.  The infectious disease docs think that as long as the repeat line culture (they drew today) is negative, we can keep the line. 

Let me repeat those words please...WE CAN KEEP THE LINE!  No surgeries scheduled to stop the belly.  No access issues or rushing a sick child through another illness to try to get rid of the line.  Don't get me wrong, we need to get rid of it, but we may have bought some more time. 

She'll need at least 3 more weeks of IV antibiotics, maybe as much as 6, but we can do that at home. 

As long as the line culture is negative and she remains fever-free we could go as soon as Wednesday or Thursday.  I am so excited about that :))  Finally, a turn in our favor.  I'm not saying that this is a good situation, I'm only saying that it's finally not so horribly complicated.  We admitted her with a serious problem; we are treating a serious problem--but that's all. 

I am praying that this goes exactly the way we think it will.  I'm trying to maintain a reasonable sense of expectations given Abby's history, but I just don't want to be reasonable.  I want to be happy and excited that we might actually spend less than a week in the hospital with a line infection.  I will be crushed if that changes, so sorry for that post if it comes.  Tonight, I am incredibly grateful and outright relieved... and completely :)))))!!

Here I am again

Sitting across the room from Abby's hospital bed.  We finally bit the bullet and brought her to the hospital last night.  Just in time--as far as I'm concerned.

Her temp spiked to 103.7 and again had the freezing cold hands and feet.  That just freaks me out!  She looked bad all day Saturday and knew our time at home was dwindling.  I finished packing the bag I'd started.  Jeff's cousin came over to stay with Em and Sarah so we could take Abby together. 

We took her to Brenner Children's Hospital which is about 35 minutes from our new house.  They've been great.  Very comprehensive in the ER, and no wait--a pale shivering child with nearly104 fever might have helped with that.  I knew it had to be the line, but still hoped it wasn't.

They began treating her with antibiotics in the ER, and continued when we got to her room around 4am.  Jeff went back to Em around 1am when we knew they were keeping her.  For about 2 hours in the early morning she shook like I've never seen anyone shake before.  Her temp was only 100.4, so they think the violent shaking was just from the infection.  I was so thankful we brought her here, because if I had seen that at home, I probably would have called 911.

Her white count was 5.7 again (same as the last time she had a line infection).  Apparently that's high for Abby.  We were told we would stay at least 48 hours to rule out the line infection, and started her on the dreaded Vancomycin.  She immediately broke out in hives on her neck, chest and back--even with benadryl.  She looked so horrible though, it was worth the nasty antibiotic.

She's run a fever all day today, although lower than before.  Her high today was 101.8, but not less than 100.  This evening we got word that the initial line culture is positive.  NOT positive news.  Tomorrow the barrage of infectious disease docs, and residents, GI, and attending's begins.  Oh my, I miss our regular Dr.'s so much right now. 

I can't begin to see where this is all heading (mostly because of my head stuck down deep in the sand), but we're here.  Again.

thinking

As previously discussed, leaving Abby was really hard. 

Little did I know that coming home would be equally as hard.  Not because I didn't want to come home, but because after being with her for 8 solid months, I didn't realize what a shock it would be to see her. 

It literally aches to see my little girl like this.  I wasn't prepared for it.  If anyone should know what to expect, it would be me, but it's like it happened all over again. 

I rubbed her sick little tummy and let silent tears fall as the scarred, swollen surface rose under my hand.  I remember looking at her belly before her baclofen pump surgery thinking how perfect it was.  2 years ago, she had never had anything wrong with her, other than CP--which was plenty.  I think it's good to have some perspective.  It helped me to be able to see her more clearly, even if it made me sad. 

She's had a difficult week.  She ran a low grade fever the whole time.  99.9 on Monday.  100.2 on Tuesday.  100.5 all day Wednesday.  100.8 after her nap on Thursday.  Today 102.2.  Forget the natural progression today.  She just didn't feel good.  I prayed all day.  I did not want to take her back to the hospital.  Oh my goodness, I don't want to be there.  I know she needs so much and I'm not sure what to do with her.  Her weight is down to where she was in February when we started TPN for the first time.  Maybe that's what's going on with the fever.  Who knows. 

I feel like I should be panicking about the line, but I just don't have the energy.  I'm worried, but her temp did go down to 100.8 this evening without Motrin.  I am thanking God for that and counting my blessings.  I did start getting a hospital bag together, but I didn't finish it. 

Abby's been out of the hospital much longer than I thought she would, so Thank you Lord!  Now I'm praying that when we go back, it will be the last time.  I'm not sure how much longer we can all go through this.  This time, I pray that God would let her finally be well.  I'm anxious to write about something (anything) other than sick kids.  I guess tomorrow we'll know more...I'm cringing a little with the words.  I don't always want to know.  :)

Mountains and valley's

Do you ever wonder if mountains exist simply to prove that there are valley's below?

Why does it seem that each awesome, amazing, exactly perfect experience is followed by the polar opposite?

I had an amazing time at the women's retreat.  I loved spending time with the ladies and the speaker really spoke to me.  It was one of those times when I would have a conversation with someone, trying to explain what I was going through and sit in the next session and there it was. 

She broke down the verse about loving the Lord your God with all you heart, with all your soul, with all your strength, and with all your mind. 

I've been trying to explain what it feels like to go through what we have and still trust God's plan, even though I don't love the road we've traveled. 

In breaking down the Greek translations of the words love, soul, mind, and strength (which ya'll can be grateful I won't try to do), I was struck by the completeness of the way God wants to be loved.  Not just our idea of a feeling, but with action and motivation.  What I loved most, was understanding that one may not always be able to love the Lord in all of those areas all the time well.  But, in striving to love Him and others that way, sometimes one of those areas of love can carry us through. 

I don't know if I explained it well, but she did.  In my mind I trust the sovereignty of God and know that He loves in all ways well.  I KNOW that we are in his hands.  My heart is heavy with the burden of a sick girl and it's hard for me to love Him emotionally well now.  I am hurt, and sad and I don't feel that warm fuzzy love I wish I could.  That is why loving Him well with my mind and my strength pulls me through each day.  I can choose to love, even when I don't necessarily feel it.  She went on to explain that the level of intimacy we have with God extends to others. 

It was exactly what I needed to hear.  That combined with awesome worship music, walks on the beach, and laughing with friends made my time away from Abby well spent. 

I rented a car to drive back from Jacksonville for two reasons.  1.  To have time to decompress before jumping back in to life.  2.  It was cheaper. 

The first part of the trip was perfect.  I had time in prayer and with my thoughts.  The second part was why I needed the trip to begin with. 

My family called me more and more frequently as I got closer to home.  I smiled at this the first half dozen times.  Then I hit traffic on a Sunday afternoon.  The second I hit the NC line, I was in bumper to bumper traffic--and the phone didn't seem to stop ringing.  What should have taken 90 minutes took more than three hours.  I got lost coming in to Greensboro, called my husband for directions and just ended up mad with his "just read the signs keep driving, you'll find something you know"  comment.  Ugh!!  Then I drove all around the city feeling myself fall further away from the mountain top. 

I came home to a nauseated, sweaty Abby.  Her broviac site is red.  The house is nowhere near the way I left it.  My husband was frustrated and needed to work.  Sarah's bed had broken, Hannah came home from the weekend and ransacked my closet, and my poor Emily had a nasty cold, which she told me about by repeatedly blowing her nose on me.  Hannah and her friend had gone back to Pfeiffer, and I couldn't get her by phone to be sure they made it in ok.  By 10 pm, Jeff was at work, Abby asleep, Sarah's mattress on the floor so she could sleep, the dog out and back in, a single load of laundry started, and Hannah freaking me out!  I finally called campus police to check on her which she did not appreciate.  A few words of advice Hannah---PICK UP YOUR PHONE!! 

I rocked Em and gave her some cold medicine which I'm not supposed to do with her seizure meds, but she needed a break from the constant nose blowing.  She slept on me for about an hour and I finally dragged my battle scarred self into bed around midnight. 

Yesterday Emily was home with her cold and Abby ran a bit of a fever all day.  Her feedings are going awful and I am left wondering.  What? 

Why must I drive (literally) directly from the mountain top with good intentions and full heart into the valley with a bad attitude and an insane life?  I have no real answers other than this is life.  It's real and it's hard. I have to choose to love Him and my family even greater with my mind and my strength, because I'm not feeling fuzzy. 

I'll get more into scary Abby soon.  And I'm sure I'll get back into the swing of things too.  One thing's for sure, I definitely live in the valley.  Not 90210, but the one the Lord has led us to, so I'm trusting Him with everything I have to give.

Shakin' in my boots...

..Or flip flops as the case may be. 

Abby has had an awful day.  She's so nauseated and just overall sick today.  I had to stop her feedings.  I never stop her feeds.  Her broviac site is red and she is completely "off". 

Em looked a little icky after school, making me panic about pulling the J-line.  Could it have been helping to support the mesenteric artery so that her small bowel was open?  I have no good reason to think that, so I'm literally making stuff up as I go along. 

I'm supposed to be on a plane in 8 hours. 

8 little hours and so many things could happen.  It has never been so hard to leave.  I know I need the break and I'll be better for it, but leaving Abby so sick is awful.  I know how long she's been this sick, but it doesn't change the way it feels.  There are so many things I do everyday that I can't tell someone else to do.  I look at her and evaluate constantly.  I try to stay one step ahead, but how do you put that down on paper for someone else to do?  It's not that I don't think anyone else can take care of her, but I know no one else knows what each and every look on her face means. 

I'm shaking.  I have to trust that she's safe out of my site.  I had no idea it would be this hard to leave.  Every single night I put her to bed wondering if she'll wake up in the morning.  For a while I was choosing her night clothes thinking "no, not that one, I wouldn't want her to die wearing that ugly shirt".  I had to make myself stop that.  I have to care for my living child, not a dying one.  As I prepare to leave tomorrow, I have to do the same.  Stop myself from wondering if she'll be alright and trust that she is exactly where she's supposed to be.  Her daddy loves her and can take care of her.  Her grandma completed IV therapy 101 today and the Lord has her in His hands. 

Oh how very shaky mine are as I let her go, even for a weekend. 

trying

I'm really trying to be back, but I don't exactly know where back is.  I feel like I'm looking for a way back to something that feels familiar, but it's just not there.  I'm doing alright here in NC.  My days are as carefully controlled as I can make them.  We all walk around on eggshells because we know Abby is still so sick and we're just not sure what she needs.

We took her to the GI specialist here on Friday.  I was so thankful to get her in so quickly and it seems like it'll be good for her.  They have a motility clinic with doctors that specialize in GI dysfunction.  I hope when we go to clinic next month we'll get more answers.  The doctor we saw on Friday wanted to put her in the hospital, but I managed to talk her out of it, at least through the weekend.  We got IV fluids delivered to the house, so I thought we could last a while longer. 

We are just struggling through feedings and horrible nausea most days.  I wish it was possible for her to not eat at all.  I just dread hooking up her feeds everyday.  I know she needs it, but like I've been saying for months, I wish she didn't.  I want her off of IV fluids.  The broviac is like a ticking time bomb.  This one is much more difficult to maintain.  It was red around the site last week, but we got some bactroban on it and it seems better. 

We still ended up in the ER with her on Sunday anyway (because what else would we do?).  She hit her hand on a display desk at Walmart on Saturday and it bruised so badly, I thought it was broken.  Thankfully it wasn't, but it looks awful.  Her low platelets and maybe the heparin she's on for the line are making her bleed a little more than normal, so it looks much worse than the injury is.

Emily has started school and is doing well.  So far, I am much more impressed with the schools here than in Florida.  They seemed excited to get her in and working and they had no problem putting her in the gen ed.  She's been really happy.  She's gaining weight and overall doing great.  We started feeding her by mouth again and bolus feeding through the G-tube (not the J she got for the SMA syndrome).  Tonight her G-tube clogged and I could not get it moving.  I tried everything but it just wouldn't work.  Since we were feeding through the G-tube anyway, I decided to pull the g-j tube and put in a regular old g-tube.  I was nervous about it because of the length of the tube, but it was fine.  I'm glad it's out and we're back to normal with her. 

Sarah is adjusting to middle school fairly well.  It's a transition for her, but she's starting to catch on.  She's not loving all the homework and I'm not either, but we're handling it. 

Hannah is extremely happy and doing great at Pfeiffer.  I hope she's studying and doing well, but we'll see ;)

Overall, I just want off this train.  I am so tired of going through so much.  I'm leaving Abby this weekend for the first time since last October.  I'm going to our annual women's retreat at our church.  I really need this time, but leaving is hard.  Abby is precarious at best.  I don't really feel safe leaving her, but I need to go.  I need to spend some quiet time with the Lord and hear what He is trying to speak to my heart. 

Our journey in the last year has been unbelievable.  I've got to somehow come to grips with where we are now and try to live in this moment.  Sometimes when Abby is having a really hard day, I pick up that long 13 year old girl and hold her in my lap in the recliner.  We rock and talk and I look at her long, sweet fingers and kiss her face.  Being able to climb up into her mommas lap and be held takes just a little of her hurt away for minute. 

I really believe that our faith should be able to provide that same sense of security and relieving of burdens that Abby gets from me.  I should be able to climb up into the Father's lap and find peace.  I should be able to snuggle into His word and find comfort.  I haven't found that lately and I feel more lost.  I'm praying this weekend will be that time for me.  A time to renew and refill.

Please pray that Abby would hang on through the weekend out of the hospital and fever free.  Pray she would have a great time with her dad and grandma and that they would be strengthened as they care for her.  It's not an easy job.  :)

Zofran

We have had a Zofran filled 36 hours.  With constant anti-nausea meds, we've been able to get Abby through what I think is a tummy bug. 

Emily started gagging and seeming sick last night.  I won't say I was relieved that she felt bad, but it was more comforting to not continuously rack my brain for possible causes of Abby's illness.  She ran a low constant fever on Saturday, but today she seems better. 

The nausea is ever present, but I think I've gotten enough of the feedings in her to get her through.  I ran IV fluids last night too, which seemed to help. 

After Emily getting sick last night, she's seemed fine most of today.  Just a little more tired than usual. 

The panic is beginning to subside and I think we are over the worst of it.  Whew!!

I was able to enjoy Hannah being home this weekend and we even got some stuff done around here!  I am thanking the Lord for answered prayers and unbelievably grateful that my child is home where she belongs :)

Panic

Abby woke up retching this morning.  Gagging and trying desperately to throw up past her NISSEN (reflux repair). 

Panic.  That's all I feel is cold, numb, sweaty panic.  I recognize that this is not a normal response to a pukey kid, but she's not a normal-response type of child. 

She's kind-of pale.  She looks thin.  I vented her g-tube.  Nothing.

More panic.  She's always nauseated when her tummy's full or we're feeding her.  This is first thing in the morning and she's empty. 

No fever--that's good. 

Run for the Zofran and give it slowly.  More gagging. 

What's wrong?  Why is she so sick.  Just one weekend out of the hospital is what I was looking forward to.  Hannah's home for a visit and I just couldn't wait for our first weekend all together again. 

It doesn't matter what's wrong with Abby.  If I can't feed her, I can't keep her home.  Even if it's just a little tummy bug.   I'm trying so hard to transition her off of IV fluids; I'm giving her a liter every other night.  Last night was her off night.  I hoped to stop completely this week. 

It feels like my whole world just stops spinning for a second and then starts again in a different direction. 

I've only known she was sick for an hour.  So maybe this is just a crazy fluke and she'll be fine.  Even as I type the words my momma-instincts tighten my chest.  I know this isn't okay for her.  I'm praying I'm wrong and at the same time preparing for another trip to the hospital. 

Last week I almost defiantly--maybe faithfully---put my hospital duffel bag at the very top of the closet where I could barely reach it.  I didn't want it sitting out in my room as it has been waiting to be filled.  I am praying...no, begging God for a break.  No more hospitals for a while. 

I'm back

Sorry for the long break, but it wasn't really a break.  I've worked harder than I've ever worked in my life in the last few weeks. 

As soon as Abby got out of the hospital we made plans to move.  I packed non-stop in between caring for the kids.  Jeff came in, we got the truck the next day, loaded it for two straight days and then hit the road with the kids.  The trip went remarkably well and was honestly much easier with Emily and Abby not needing to eat.  The running tube feedings all day made a much faster trip.  I always feel guilty when I say that.  I still feel like they should eat, even if it's not happening.

We pulled in Friday night and first thing Saturday morning Jeff and I took Hannah to Pfeiffer.  I would have probably had tons of tears if I hadn't been so exhausted.  As it was, getting her there was a MAJOR accomplishment and all I felt was grateful.  I teared up a little as I thought of my tiny 4 pound baby who made me a mother, challenged and taught me.  But then I did what every mom should do who gets her child to that place in life.  I smiled and patted myself on the back for a minute.  She's a good kid.  She loves the Lord and sending a child into the world with a love for her Jesus is a blessing.

When we came home from Pfeiffer, Jessica (our helper) was sick, sick, sick.  We had an entire house to unpack and someone else to take care of.  We took her to the hospital where they discovered she had a large kidney stone.  She went to surgery that night.  I sat in a surgical waiting room barely 24 hours after crossing that state line.  Surreal doesn't even touch it.  She was sick until she able to hop a plane back to Fl.  Somewhere in the middle of all of that--I'm not even sure where now, I broke my toe.  It's not that big of a deal, except it hurts and it's another thing to think about.

Our new house is sweet.  It has lots of North Carolina charm.  We are pretty well settled.  There's always something to do, but that's okay because I need to fill my days with something, right? 

I love this view outside of the window

wood burning fire place in my dining room

Gas fireplace in the den.

Emily's room--still needs work, but love the size :)

Our little kitchen, this was the hardest to get used to!

LOVE that my van fits in the car port.  No more running in the rain with wheelchairs~

Speaking of Abby, she doing alright.  She spent the weekend in the hospital because she ran a fever Thursday night and then started having diarrhea.  She has C-diff. which is a nasty bacterial infection of the colon.  It's common after long hospitalizations and antibiotic courses.  Thankfully her central line is doing fine.  That is always the concern with any fever.  We are treating the infection, but oh my goodness---this is a yucky problem to have.  Bleach is the only thing that kills the bacteria on surfaces, so we are constantly bleaching everything and washing hands all the time.   Beyond the inconvenience of it, Abby needs her calories and fluids.  So far, she's handling it.  I've pushed her pretty hard with rate.  We're trying to take her off of IV fluids.  I don't know if it will work, but I want her back in school and our lives back to normal, so I'm going to try until there is absolutely no other choice. 

Sarah started school on time here, Emily should start next week.  All of that it's going well.  The girls have been pretty good and uncharacteristically cooperative.  There are no words for how grateful I am for that.  We have no helpers here and I am exhausted most days, so the girls helping me is unexpected and awesome. 

God has certainly been good to us through this transition.  I wish I could say I've been so good through it all.  It's been a struggle for me.  I wish I had a great attitude through the whole thing.  But Jeff and I loading that truck together...man we might as well have been packing nuclear bombs.  Thankfully we are settling in together too.  I forgot how hard marriage is.  Silly me.  Grace, grace, grace is all I can say.  Thankful for grace that I am in such desperate need of --both from my husband and the Lord. 

The more settled in we are the better I feel.  The constant possibility of Abby going into the hospital made this so much more difficult.  And then she did go in the hospital.  And we got through it.  And we will continue to. 

This is the verse I am clinging to right now.  I love what is says and how it speaks to my heart and my situation. 

“Forget the former things; do not dwell on the past.  See, I am doing a new thing! Now it springs up; do you not perceive it?  I am making a way in the wilderness and streams in the wasteland."  Isaiah 43:18-19

Fast

OK, so this has been the fastest moving week of my life..

Abby came home late Friday evening.  I don't know why it takes so long to discharge a patient when you know she's going home all week long, but that's neither here nor there.  I dropped her right off and promptly met my friends to see "The Help" and have a little dinner.  I needed a break more than I needed air at that moment.  I didn't have even a second of Mommy-guilt for going.  I'd been with her for more than a month and the other girls were going to with me non-stop beginning the next morning.  I loved being out and I LOVED the movie. 

Abby's doing relatively well.  Her color is occasionally icky and pale, she still struggles with feedings and swelling tummies.  She ran a low grade fever today--which freaked me out.  She seemed okay--definitely  really happy to be home. 

So are my other girls.  Hannah maybe more than anyone.  She really ran the house for a while.  She says she firmly understands that "babies are not love"  :)))  I don't think I need to worry about that with her.  She also feels ready for college now.  After running a house and taking care of sisters, she thinks dorm life will be a breeze; I agree. 

Emily is doing so-so.   She still struggling with weight-gain, some pressure on her skinny little hips and nausea/residuals.  I don't think her SMA syndrome is resolving very quickly.  I will be anxious to get her to a GI Dr. in North Carolina. 

Speaking of NC, we found a house.  Yaaayyyyy! 

It's a rental that I'm already itching to change but know I can't.  Saturday morning began the pack-a-thon.  I am really excited about moving, but know I'm going to miss my friends here.  It's bittersweet to leave.  Jeff's on his way home from the airport now and we are hoping to pull out on Thursday.  I can't believe how fast it's all happening.  We know we need to get Abby where we're going ASAP in case she needs a hospital, but the number of details we've handled and the amount of work we've done is astounding. 

We have a ton of stuff to do, but feel incredibly grateful for the many things that God has already worked out for us.  We're walking by faith through every single minute of the day.  Please pray that Abby handles our trip well and the million things we need to work out when we get to NC. 

Off to do even more packing :)

Home

Abby is home.  She's in her room, watching a cooking show.  It's awesome and scary to have her home.  I'm thrilled to be here though. 

I skipped out almost the second I got home and went to see "the help" with my friends.  I was desperate to do anything except take care of Abby for a while.  I was really tired, but very thankful for some time away.  If we didn't have so much going on, I would have waited a bit, but I wanted to be sure nothing came up and I missed spending time with them. 

Abby doesn't look as good as she did when she was on TPN.  Her color isn't as good and she's much more tired.  The IV fluids and the feed rate we're at isn't going to buy us much time. 

We need a lot of prayer over this move.  Many many things need to work out, specifically the timing of everything and Abby's health. 

I'll update more later---I have TONS of stuff to do today.  Life stands still for no one ;)

A new plan...

and a big dose of reality. 

I finally had to come to grips with the fact that Abby can not be pushed.  She simply doesn't tolerate rate changes well.  My plan to bring her home without using the Broviac is just not going to happen.  We are only going to run regular IV fluids and not TPN, which was a compromise.  There was just no way for her to safely make this move without it.  We discussed every combination of formula and pedialyte that Abby could even remotely tolerate, and determined it just wasn't going to happen. 

She's simply not ready to support her self nutritionally.  I am definitely disappointed that we weren't able to wean the IV fluids.  She hasn't gone without them in six months.  I wish this time it could have been different, but it's not and we have to deal with it.  If there's a silver lining, it's that she's less at risk for having to go straight into the hospital when we get to NC.  The fluids will keep her above water (no pun intended) for a month or so.  We hope to have her set up with Dr.'s there by then and make decisions as they come. 

As the conversation went around with the Dr., pharmacist and social worker about a plan for home, I slowly began to understand that I couldn't take her home without the extra support.  I think they had all been waiting for me to come to that conclusion.  When it dawned on me, I asked Caitlin how long she had known that my plan wouldn't work.  "Almost from day one" she replied. 
"Why didn't you tell me?"  I asked
"Abby deserved the chance to try, and you needed to recognize that you have no control over this situation.  Now you know it's not because we didn't believe it couldn't work, but because it simply didn't work"  
Have I mentioned that I love Caitlin? 

I know we tried and her belly just doesn't work well.  Her x-ray showed a lot of air--which was no surprise because it's so distended.  She's been having a hard time with the feedings running right through her.  We were hoping the x-ray would shed some light on that, but it didn't.  A common problem with J-tubes is decreased absorption.  We may be having that problem with Abby.  There was nothing solid in the intestines, which wasn't what we'd hoped to see.  That might pose a problem because she won't get the nutrition she needs if this continues. 

The second biggest problem she has is her white count continues to be very low.  Today, she was around 2K (5-10k is normal).  She isn't demonstrating an appropriate immune response/recovery.  This concerns us all because she still has the central line and the risk of infection that goes with it, and because white counts are an indicator of infection for most people. Her low count delayed treatment for the line infection this time, and had she had a more serious bacteria growing, she could have been in a lot of trouble.  Even common illness's could be a big problem for her.  Luckily, that's a concern for another day. 

She should go home on Friday, THANK YOU LORD!!  I can not wait to get home.  They want to run her on the new program for a few days and repeat the labs before we go.  I'll admit it's a relief not having to think of rate changes tonight.  We can all breathe a little. 

Emily's appointment was rescheduled for tomorrow, so hopefully she'll get squared away too. 

This is all exhausting, but a plan is a plan...and I like a plan :)

Quick Update

I am going to officially say that the J-tube is better for Abby.  She had a really bad day yesterday because I tried to raise the feeding rate too quickly.  That made the entire day awful and sick. 

I had to laugh at the pharmacist today--I just love her.  We were discussing Abby's feed rate and TPN.  I was saying how comfortable and good she looks when she runs at only 45cc/hr (she should have 75).  Caitlin, in her typical mathematical-pharmacy way said "well, actually, calorically it's possible for her to stay alive at that rate"  It struck me as hysterical.  She followed with, "although fluid volume wise, she wouldn't"

As I was literally laughing so hard my side hurt, I wondered exactly when I wondered onto a plane where intake is categorized by whether it's possible to live or die at a particular rate.  It's probably not funny to the rest of the planet, but to me...that's FUNNY!  :)) 

The view I go to sleep with every night. 

Abby still has tons of issues to work out.  The Dr. ordered blood work and a belly x-ray tomorrow, so hopefully we'll have a better idea of where we are.  As Caitlin so aptly put it, we might almost be at a place where Abby can sustain her own life (nutritionally) soon, so we are beginning to discuss a possible discharge date.  Maybe even towards the end of the week. 

I went home for a while today and checked on Emily.  Please keep her in your prayers.  The child is skinny--I mean scary thin.  I think she must be in a growth spurt because her muscles are really tight.  That is not a good thing at all because we really need her to gain weight to resolve her SMA syndrome, and tight muscles burn calories.  She sees the Dr. tomorrow.  I'm really glad.  I think she might be getting some pressure on her hips.  I'm very concerned about her.  I hope by the end of the week, I'll be home to take care of the little munchkin.  I miss my girls. 

I'm a little better today too.  I don't feel quite so overwhelmed.  I'm not sure why I don't, but I'm thankful. I'm just still trusting and believing there is a plan greater than my own in place here.    I'm going to sleep in a few minutes trying my best not to think about what tomorrow may bring---good or bad. 

I'm hoping to post a move date soon too.  We really need to move Abby as soon as we can after she gets out of the hospital. 

Thanks for praying for us and with us.  I can feel your prayers and I know Abby is being lifted up.  It means everything to me. 

Better?

Abby's new J-tube might actually be working.  I wish I could feel completely excited about a few good days, but it's been such a long road, I can't help but feel cautious. 

She's far less nauseated.  That is a huge blessing.  It has been horrible to watch her feel so sick for so long.  She's still occasionally nauseous, but not the constant sick she's been.  The J tube has it's own issues for sure.  Her belly distends as the intestines swell with her feedings.  She seems able to handle it without too much discomfort though.  We still have several issues to work out, but better is better. 

We have been able to work up to 12 hours a day (from 9) in the last few days.  We have also been able to raise the rate a little today.  2 of the 4 feedings today ran at 45 instead of 40.  15cc's (1/2 tsp) more doesn't sound like much, but it really is for her. 

Day after day with no progress is the hardest thing to deal with.  Waking up each day, trying to be positive and hopeful when every night I go to sleep battle-weary from long, sick days became almost impossible.  Knowing that there are very few (I haven't heard of any) good outcomes for this problem has weighed on my heart heavily.  So even though it's 3 hours and 15cc's of progress, it's there and I'm thankful. 

When Emily and Abby were babies progress used to be few and far between too.  We would work and work in therapy and at home for any little thing.  A swipe at a toy; a propped up sit; a muttered sound; a taste of a new food; tolerating the feel of a new texture.  I remember so vividly how desperate I would become for any sort of improvement, knowing that each day of the same left them further away from the future I prayed they would have. 

When months would go by, I'd become frantic.  I prayed and prayed for more for them.  Then I would hear a new sound, or watch  a hand reach out to hit a toy.  I laughed, cried, and danced around the room to celebrate their accomplishments.  Relief and gratefulness would pour through me as I realized we weren't done.  We weren't already at the end  of what they could do physically. 

Here I sit again, hoping each day that I'm not at an end with Abby.  Every day that passes is harder and harder to feel like she can get better.  Just when I'm not sure I can endure the loss of another day, she does something different.  Something better. 

I'm thankful for better, for however long the Lord allows.  I really needed something to change, and  something changed. 

I have personally never been through anything like this year before.  Even when the twins were born and diagnosed.  The grief and sorrow of that time was overwhelming, but partnered with little babies that needed me and a desire to help them overcome challenges. 

This time, after more than 13 years of caring for them, it has been so very sad for me .  Today, I nearly cried because I had to wait in line for a name badge.  I've been here a month, they all know me...but it wasn't the name badge.  It was the month.  It was Abby and her swollen belly.  It was me and how desperately I still wish that my girls were alright. 

It was also a better day. 

"These were all commended for their faith, yet none of them received what had been promised, 40 since God had planned something better for us so that only together with us would they be made perfect."   Hebrews 11:39 (niv)

Enough Grace

I don't really know where to begin these days.  So many things happen and move so quickly, then at the same time, nothing really changes. 

Emily is doing better at home.  Hannah is taking care of her most of the time. While this is not an ideal situation, she's doing a really good job.  She's stepping up where I need her to, and Emily is slowly recovering.  Hopefully, she'll be well enough to start school in a few weeks. 

Abby struggles every day with her feedings.  She is off of antibiotics now, but she continues to have tummy troubles that we had hoped were related to her being on them.  Today, they put the same g-j tube in Abby as Emily has.  We don't know if it will help or not, but the hope is that cutting out that much of digestion will make it easier for her.  The danger is that formula that doesn't move through can swell up in the intestines, causing her tummy to distend and become uncomfortable.  Her belly distends everyday anyway, so maybe we're not worse off.  The doctors/pharmacist and I are trying to come up with a plan for her, but it's been difficult because she's so complicated.

Our plan (that changes constantly) is to move very soon.  As soon as the house in Greensboro is in place, we will move the kids.  We'll come back for Abby, and if her rate is good enough, we'll try to take her to our new home.  If not, we'll take her straight to the hospital in NC.  We know she'll be stable enough to make the trip, it's just that she'll probably need more fluids and calories than she can take in herself.

To say that none of this is discouraging, would be a lie.  I am heartbroken.  I am so sad for my sweet daughters--all of them.  I'm so sad that we can't leave this place I've come to love with joy as we look to the next phase of life.  I can't stand that I can't spend time with my friends and people I love before we leave. 

I had envisioned "last times" to my favorite Sushi place with my girlfriends.  Last Sunday at church.  A time to say see ya to friends and neighbors.  I have changed and grown so much under the influence of the amazing people I've come to know here.  I don't understand why the Lord has allowed so much difficulty in our lives here at the end of this particular road.   

It's easy to feel discouraged; even unloved.  Tomorrow marks Abby's fourth week here.  Since January, Emily and Abby have spent a combined total of 89 days in the hospital.  I can't imagine that anyone wouldn't feel discouraged.  Abby has been on TPN for almost 6 months.  We thought she would be in liver failure if she was on it that long, but she' not.  Her liver function is actually pretty good (PRAISE!!).  But she is no closer to being well than she was so many months ago.  We all recognize that she can't go on like this forever.

I know I have so many things to be thankful for, but I struggle to combine the hurt, confusion, and exhaustion with the gratefulness for how God is working in it all.  I will never be happy that we are leaving Florida this way, or that Abby is so sick.  I'm not thankful that I'm worried we are getting a bigger house than we need because Abby might not be with us in a year.  This is hard stuff.  But I have to believe that every second I'm in, His grace is enough.  If I can't say good-bye to the people I love here, or if the time comes to say good-bye to my daughter, I'm trusting that His grace will be enough for me then.

I love all the verses you guys sent me!  I put them on the cabinet so that they are the last thing I see at night and the first thing I see in the morning. 

So if your wondering how to pray--

~ Please pray for discernment for Jeff as he chooses our house tomorrow--we've narrowed down the top 3.

~ Pray that Abby would tolerate her feedings and just generally look better than she does. 

~ Pray that God protects her and Em during this move from any further illness.

~ Above all, please pray that His will be done for our family. 

~Pray for grace, grace, grace---pray that I would know that His grace is enough for me, when every thing else seems to be far to less than I'd hoped. 

Thank you for walking this road with me, it helps so much to not be alone.