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.