Thankful

We just finished our second Thanksgiving without our daughter.  I'm not sure how that's possible, but it's true. 

I wish I could say it's easier, but it's not.  Every day is further away from her, and yet I know, it's closer to her too.  She used to consume every thought, but each day fades them, and that is a grief of its own.  I think of her every single day,  but not every minute.  Last year, I could talk about her without crying, this year, I can't. Seeing her name in print leaves me longing for her in a way that is hard to shake.  Abby.  Abigail.  Abby-Grace. 

I said that name more times than I could ever count, and now it has drifted from my vocabulary.  My Abby, who consumed this blog, and my life, isn't here anymore.  There are no new stories, struggles, funnies, or challenges.  The life I lived with her has to last my lifetime and I know it will never be enough.   It's really hard for me to write, knowing that words in print are leaving her behind too.  I have no reason to say 'Abby', except for my own desperate need to see it on the screen. 

My stories now, are about learning to live without her, not living with her.  Another grief all its own.

Jeff and I were getting Christmas ornaments down from the attic tonight when I came across a box of Abby's things.  I opened it, and pulled out the first item. 
'Oh, Jeff, look! Abby's IV backpack.'
There was silence as I continued to poke through the box.  Abby's pain log, a notebook with doctors orders, DNR papers and med lists, and then her sweet stuffed animals that sat on her dresser, her dolls, and a necklace.  He didn't know what to say, but to me, that was Abby.  Lot's of  medical stuff, but mostly my child.  When we talked about that, we could love seeing the IV backpack as much as the other things.  They kept her with us, and were apart of us all.

Our lives may be moving on, but my heart will always remain with my precious daughter.

Even with such great sorrow, there was much to be thankful for yesterday.

Emily is doing great!  She had lot's of g-j tube trouble and drama for a few months, but seems to be settled at the moment.  She is cheering for a competitive cheer team, and did a night with her school, and will cheer for the special Olympics basketball team next week.  She LOVES it and we are so proud of her. 

I have more catching up to do than I have time, but I just wanted to say that I am thankful.  For my family who show up for me and miss her with me; friends that I miss more than air; and for Abby.  I would walk through the pain of losing her a hundred times over to have had the 14 years, 7 months, and 6 days of seeing that sweet smile.  I am unbelievably thankful for that.  I'm thankful for the life I live, my husband, my girls, and most of all for the the peace I have in knowing I will see Abby again.  Even in all the grief, there is hope.  I am truly thankful.

I'll leave you with some 'catch up' pictures, and my hope and prayer that you all had a day filled with thanks too.

Cheering for Greensboro Allstars

Cheering with her friend Megan at school

Sarah playing the flute at my brothers wedding

All of us

Emily, being a queen for a day surrounded by awesome chefs

An oldie, but a goodie of Abby.  That little girl LOVED Legos.  <3 td="">

I am the mother of teenagers.

Really, I am.  I knew it was coming and thought having already raised one child, I could handle it.  I can, but Emily and Sarah are each completely different types of teens from Hannah and each other. 

Hannah was kind of steady and really pretty easy.  She wasn't boy crazy or too dramatic.  I think I have both of those things now between Emily and Sarah.

Emily is loud and opinionated.  And she likes boys.  If she could crawl out of the window there is no doubt she would be the child we bolted windows and doors for.  As it is, she looks at those boys and smiles her sweet Emily smile.  She's completely in love with Bobby Flay (Iron Chef), which I get.  I love Rick Castle.  I think it's perfectly fine to have a TV crush.  She is so funny when she watches Iron Chef because she knows who it going to win, having watched it a million times.  She still jumps and gets so excited when they say his name.  He's a lucky man to have a fan in her. 

Lately she is ALL OVER me about the radio.  She only wants it on one station.  Luckily it's the one Jeff works for.  Every day she gets in the car and yells at me until she's sure it's on the right place on the dial.  She even makes me listen to commercials.  It really is funny, and slightly annoying as any teenager worth her mettle should be. 

She uses a communication device to speak and write, and recently got a new keyboard added so it can save data and interface with  a PC.  The keyboard that she uses for that function doesn't include word prediction or backspace keys.  I keep trying to explain that she only needs to use it for computer classwork, but the little stinker yells at me and goes right back to using the wrong keyboard.  She won't listen.  I put the correct one up and five minutes later I walk by to see she's taken it down, and put the other one up.  I love this independent streak she has going on, but it's also a challenge.  Teenager. 

Sarah is another one.  Only 13 and still generally sweet, she's just beginning to become a challenge.  Picture day is tomorrow, and she and her friends decided today they would all wear dresses, so of course, she has nothing to wear.  "Will you please, please, please take me shopping tonight at 7:00pm and then straighten my very long, Rapunzel like hair when we get home because I'm absolutely certain you have nothing else to do?" 

It's possible I added a few of my own words to that quote, but you get the point.  I know I could have easily said no, but honestly, such a deliciously normal problem is impossible to resist after all I've been through.  So, I went because I forgot I was dealing with a teenager.  She tried on 5 dresses (4 were my idea, so easily ruled out).  She didn't like any of them and decided she was wearing jeans, which led to the hunt for a new top.  After trying on at least 10 and trying unsuccessfully to talk me into going to another store, she decided she was taking the original dress, and adamantly denied declaring only moments earlier that she wouldn't wear any dress.  Teenagers. 

These are just small examples of my life now.  I can't express the exhaustion or joy in everyday, normal, humdrum issues.  It is a blessing to be this kind of tired, and to have teenagers.  Even when they drive me nuts. 

Catching up

Whew!  Time flies whether you're having fun or not. 

Emily first.  She's doing great overall.  I've been very, very busy with her, but not in a bad way.  She started school (1/2 days) in a school she's not zoned for, so I am busy taking her to and from school.  It's a huge change from being home a lot to running around all the time.  I'm finding that I need to organize my time better to fit everything in, which explains the lack of time at the keyboard.  I'm not sure how in love I am with high school, but I'm trying to give it a fair shot. 

She had an upper GI last week because she drains out a yucky mix of formula and other nasty stomachy things from her tube all the time.  She also consistently has blood in her belly from what we assume is the tube irritating it.  Her blood counts are fine, so we know it isn't serious.  We are waiting to hear when we can replace the tube.  She's scheduled for a dental October3, which isn't a big deal, but we don't want her to go under anesthesia twice too close together.  The upper GI showed the SMA syndrome resolving which is a huge blessing, but she's not quite ready to be done with the J-tube yet.  After we replace this one, we shouldn't have to do it again.  This should last about 6 months and she'll be done with it by then!  YAY!! 

Hannah and Sarah are both fine.  Sarah is doing awesome in band and as an 8th grader.  Hannah is trying to figure out what to major in.  She's two years into college and still not quite sure.  She's working on it though.  Having a 20 year old is hard in a completely different way :/

We just passed a year without our Abby girl in our arms.  I wanted to write about it, but just couldn't.  It is simply so, so sad.  My heart broke.  I think I felt everything I would have a year ago if I hadn't been so numb and sleep deprived.  When she actually died, having her was still so fresh in my mind and even my body.  I held her for so many hours last summer, that when she died it almost felt like I just put her down for a minute.  The longing to hold her and see her smile hadn't yet seeped in to my soul.  A year without holding my child is almost unbearable.  I miss so many things about her.  I have her clothes in a plastic bag without the air in it.  I just want to smell her and remember what it felt like to have her.  I miss that little girl.  Every day is another day away from her and another day towards her. 

That's my catch up for now.  Hopefully, my schedule will get in line and I will organize myself a little!  How's this time of year for you?

Emily

We have had a tough week, but hanging in here at home. We finally got a clearer picture of her problem Sunday night. She really just has a common cold, but it's been lots of trouble.

She's struggled with feeds big time. This is a very typical symptom of her being sick, but just bad timing. She's lost two pound and that drove the GI drainage way up, and our ability to replace fluids way down. After two doctor visits and many calls, we have carefully managed her here. She might be on the upswing now (maybe?...hopefully?). She's still not back up to full feeds, but her labs looked okay today, so I'm doing better than I thought.

I'm pretty tired because she's been up coughing all night for the last two nights. She had a belly x-ray this morning, but not a chest film. If she keeps this up we may need to call peds again. She had formula in her belly yesterday, so we questioned the tube placement, but it was fine, so her tummy is just slow from being sick and backing up.

We are still praying she can start school with her friends, and that we find a school program that works for her. So far, she doesn't have a school assignment which is another thing to deal with.

I'm ready for this summer to be over. As much as I was looking forward to it, it's time to move on.

Those words clench my heart as I'm still missing Abby more with every breath.



 

Fever

Emily is sick. She's running a fever, nauseated, and not tolerating feeds right now.

Her temperature last night went up to 102.6, but finally went down with medicines around 4am.

Please pray she only has a little virus and nothing serious. She's been doing so well and really doesn't need a set back.

Thanks!

 

Sarah and Em

My cool girl, Sarah! She learned to play this while Emily was in the hospital. It's not that easy :). I love seeing her work hard to learn new things, and I love her heart for all kinds of music. She's a sweetie!

http://m.youtube.com/watch?feature=plcp&v=aJYhcKD-6DA

Emily is doing very well. After a little GI bleeding last week, which was probably just tube irritation or residual inflammation from the c-diff, and more trouble with the pump and air, she's had a good weekend. GI added Prilosec and carafate to her med list, and I think that is finally going to be what she needed to really turn around. She was putting out 600-800cc's a day from the g-tube, and we weren't putting that much back in, so she was always somewhat dehydrated. The Prilosec is an acid reducer, and immediately the g-tube drainage dropped in half. That is so much more manageable! The Carafate coats the lining, which helps with irritation, so she feels much, much better. Now we add two more to this to the rest of these. This is only her morning meds. I sure will be glad when she's back to normal!




2 more weeks until school starts, and she just might make it! I am thrilled! Her dental was a no-go. The pediatrician said it was too risky with her weight and GI status, but we'll try for September. We still have to find a school for her, but it will come. I hope.

I was able to spend Saturday with my mom, aunts, uncles, and family I've never met at a family reunion. It was a wonderful break from the house, and so much fun to be with family.




All things considered, we are doing great, which is such a nice thing to be able to say! Thank God for these days when all is well.


 

My precious Abby,

Eleven months ago, I struggled with wanting so desperately to hold on to you, and knowing how much you needed peace. I cried every day. I smiled at your sweet face each day too.   My heart broke as I felt our time together coming to an end. At the very same moment, I was so proud, and in awe of your strength. You have always amazed me!   As hard as you tried, we could all see that you were very sick and unable to do all the things you wanted to. I felt unbelievably sad as you struggled.  I missed so much about you, even then.

Today, I miss you even more. I'm desperate for an Abby kiss. I want to feel your little teeth scrape across my cheek and touch the sloppy wet place on my cheek. I think about it almost every day and wonder, if you are perfectly whole in Heaven, does that mean that I will never feel that again? As much as I've always wanted to see you run and play the way your friends could and be completely healthy, today, I want to hold you and feel you curl yourself in to me. I want your strong little head to push my arm out and complain about it as you laugh at me. All I know is my girl with CP, and I kind of want to hold you that way again.  It's been 11 months, and I'm still not ready to let you go.  

I want to see you smile, and hear your sweet voice. I even wouldn't mind being fussed at for a little while. What I wouldn't give for five minutes. Just to feel you breathe. To know you are here with me. Oh, how I miss you!

I shopped for school supplies for the girls this week, and I had to stop myself from picking up things I knew you would like. I kept seeing little things and thinking "Abby would love that" and then remembering you have no need of such things now.
Remember last year? I bought you a small pink backpack with a smiling frog on it. I knew you would never use it, but I also knew you would love it.  Your face lit up when you saw it and you laughed as we put a few items in it to carry around the house. I had to go to my room for a few minutes and let the tears fall, already grieving for you as I knew you would never go to your beloved school again.
Now I know that was nothing. At least you were there. Not buying a backpack at all was a thousand times harder.

We are almost at a year, and I don't want to be there yet. I don't want a whole year to go by. Time will march on, and before I know it, two or three will have gone. It seems too fast. Too far away from the last time you were here with us smiling that big Abby smile.

I was at the park with Emily today. I put her in the swing, which of course she loved. You loved it too. I was thinking of you, and the way you and Emily took turns. You were both getting so big that taking one of you out and putting the other one in was a challenge. You guys loved it so much, it was worth it. As I was thinking of it, a man behind me startled me out of the memory by calling "Abby, come on! Abby! It's time to go. Abby!" I just closed my eyes, and ached. I hope he knows how blessed he is to call her name. I miss hearing your name, my sweet girl, and I sure hope there are swings in Heaven.

I've cried through every second of writing this, which I know would upset you. I'm sorry, I can't help it. There are not words for how deeply and profoundly you are loved. I think you might truly know love where you are, surrounded in perfect love. Where I am, all I have is my heart, from which you will always have all my love. ~Mommy

I'm loving this song, and knowing she had all of me.
http://m.youtube.com/watch?v=7vF4tc9QREY

Breathing

I think, and I say this in a whisper, I think we are doing well. It seemed to take a long time to settle in to this new routine, but yesterday was finally better.

Emily is still tired and weak, but otherwise, doing well. I was able to change home health equipment companies yesterday and got a new pump. That helped so much. That entire situation was a nightmare! It has caused a lot of problem for Emily, but that should resolve now.

Em has been slow to gain weight, but she's not losing, so we'll take it.

Sarah is having an awesome time, Hannah is still job hunting, and Jeff and I are slowly getting back to our own crazy normal.


Thanks for praying for, and with us. Please continue to pray that Em would be ready for school in a few weeks, and she's scheduled for a dental under anesthesia the 22nd, so we hope she's ready for that.



 

Spell check

I'm sorry for the many errors on the last two blogposts. I proof read, but I think auto correct is getting me. Even as I type now, several words are changing or deleting with out me realizing it.

Em had a rough night. I think the air from yesterday in her belly has been causing some pain. I'll check with the doctor today. Off to start what I'm sure will be a very busy day.


 

Still home and pump trouble

We made it through the weekend, but barely. I almost brought Emily back to the hospital a few times, but hung in there.

Our greatest problem has been the feeding pump. Emily is very fragile as far as her weight goes. The constant pump issues have been extremely stressful. After the charger issue, we used the new pump. I began to have concerns about it delivering the correct rate immediately. The volume I set to be infused was about four hours worth, and it took around 6-7 to be delivered, but seemed to go faster when plugged in to the charger. At first I wasn't sure exactly what time I started it, but began to pay closer attention and knew it wasn't right.

Then it began to beep, and wouldn't run at all. I called the company, did trouble shooting, called again, was told I needed a new pump and would be contacted, then I couldn't get a hold of anyone else for 5 hours. In the mean time, I turned it back on to try again because I was worried she was off too long, thankfully it stopped alarming, but continued to deliver the wrong dose. When I did finally hear from them, they said there were no pumps available until Monday. If it hadn't restarted, Emily would be in the hospital right now. I was LIVID.

This morning, we woke up to a pump that never alarmed when the dose I set was delivered, and instead continuously pumped air into her for what we think was at least an hour. It's supposed to alarm when there is air in the line. I was in tears at that point, and still no new pump. They are our in-network provider, but we are done with them. It has been awful and dangerous for Emily. She lost more than a pound this weekend with all this nonsense.

Needless to say, this is far from over. She is still home, but would probably have been better off in the hospital. I am exhausted, frustrated, and completely baffled. I'll take Em to the doctor tomorrow for a check up, and then change pump companies.

She is so happy to be home, we are doing all we can to keep her here. She has been laughing at Sarah all weekend, because Sarah is bouncing off the walls excited about being blessed by a trip to see her BFF. She gets to fly to Alabama and spend the week with her awesome friend.

I can't tell you how much this thrills me. Hannah's best friend Kelsey was in town this week to see her, and now Sarah was completely and hugely blessed with a flight to see her friend. She is so happy, and I am grateful that my girls have something fun to do this summer, and it's not all hospitals and stress! God certainly blesses us through some wonderful friends!


 

Crazy

This day has been nuts...and I'm not even sure I'm on the same day.

Nope, 12:27 am; a new day.

I finally crawled into my own bed after a hot bath, and am snuggling up in Jeff's big t-shirt. They frown upon such casual sleepwear in the hospital, but it sure is comfy at home.

We all agreed to try going home early in the day, so we were able to begin working on our discharge. It was the third day in a row with no weight gain, which made us all even more nervous about this plan, and extra cautious about everything being set up perfectly at home. She also had a 100.0 temp right before we left :/ I can't even talk about her condition tonight because I need to believe that we can get through this. I have faith that we will be carried through.

Because of her precarious place, the hospital wouldn't let us go until all of the feeding supplies were in order. Along with the hospital social worker, I made a million annoying phone calls over 7 hours trying to get things in together. Keep in mind, all of this has been worked on all week. No one should have been surprised she was coming home. The agency that delivers our feeding pump and formula along with micro lipids and supplies were impossible to pin down, so we waited, and waited. Finally about 4:30, they said it would come by 8pm, so we decided to leave at 5:30 so Em wouldn't be off feeds for too long. They also couldn't deliver any formula until tomorrow. The hospital scrambled to get us enough food for tonight, but it was crazy, because of the mix she's on.

We got home around 6:30, and enjoyed a short reunion and then Emily needed to lay down. The pump finally got here at 8:45, which upset me because Emily missed 3 precious hours of feeding. As soon as the delivery guy left, I set it up and realized they sent the wrong charger for our pump. It would die around 4 am, and she would be without food again. We thought we would have to go back to the hospital. It was very stressful. I called the company and was put on hold for 45 minutes, until the call was dropped. I called back freaking out. They told us there was no driver to deliver it and they couldn't help us. I'm not even starting on that one. Jeff offered to drive to Charlotte (2 hours away) to get it. As we were waiting for them to get the proper cord, I was tearing through our supply closet. Emily had a very old pump that we own. I didn't think I had any supplies for it, and wasn't even sure if it worked, but it fired right up, and miracle of miracles I reached in a box of old feeding bags (we've had all sorts of pumps over the years), and pulled out exactly what I needed. I promise I've looked through that box many times before for bags for that pump, and didn't find any. Amazing, and completely from God.

We hooked up the old pump and saved Jeff a 4 hour drive and Emily a possible return to the hospital. At 11:45pm, it was finally all settled and I crawled into a hot bath, and now I hope and pray for sleep and a less stressful day tomorrow.

This has been C.R.A.Z.Y. It has to get better, right?


 

Home

I think we are going home today. I want to draw all sorts of happy faces about this news, but it's not completely joyful.

I say this often, but it is always true. I have never brought a well child home from the hospital. Emily is better, but far away from well. She still has not gained weight, and actually she's lost to a frightening level. No surprise she didn't tolerate canola oil directly in her intestines. That still sounds nasty to me. We had a horrible 2 days with lots of crying (her and me), and I finally refused it. She finally felt better yesterday. They replaced the oil with micro-lipids, which are broken down fats made for the tube. So far (10 hours) she is tolerating this well.

There is no good explanation for why a child who tolerates full feeds isn't gaining weight. It is frustrating for her entire team. Yesterday, we decided it was time to go home, weight gain or not. The only snag could be weight loss again today. That could keep us here. Otherwise, I think it's best to get her in her own environment and work with her there.

She can not get sick at this weight. She is so tiny that she can't lose any more. If she doesn't put significant weight on in four weeks, she won't be able to start school because of infection risk. If anything happens at this point, they will start TPN. That makes me very uneasy. Yesterday, all of this if/then talk was more than I could take. I had tear-filled conversations with every poor soul that walked through the door. Poor medical staff :/. She is obviously exposed to lots of germs here in the hospital, which is my main incentive for begging them to let her go.

Please pray for her, and us we take on the huge task of getting this girl healthy again. She has so far to go. I hope I can post pictures from home soon!


 

Still here

Emily is still i the hospital, but doing alright. She has lost weight for a few days and can't leave until she gains. I hope she gains tomorrow, but she may need to gain a few days.

She is so thin. All of her bones poke out. It's not nice, but she is off all IV support, so I'm not sure they can do anything here that we can't at home. We just have to be very, very careful.

I'm still so bummed our summer is going so wrong. My mom, sister, and nieces were supposed to visit this week, but decided to stay home because we don't know how long Em will be in he hospital. I feel like everything we had planned just keeps slipping away. I'm having a bit of a pity party tonight.

It will take a long time to make up this severe weight loss for Emily, so back to medical land we go. Continuous feeds, fluid replacements, blood work, blah, blah, blah.

Emily has been extremely cranky the last 24 hours. It's wearing me down. She's so fussy and difficult to handle because she's thin. I have to be careful with how I hold her and how she lays. They also started her on canola oil, which I think is the problem. They were trying to replace the IV fats, so they are putting straight up oil in her tube. So. Gross. I thinks 40cc's of oil a day directly in her intestines is cramping her belly. Her fussiness seems to run In wave, which leads me to believe its some sort of gas pain. I refused it tonight. We'll see if she's better without it.

Overall, she still good, but not quite good enough to go home. This feels like a recurrent theme for me.

I'm going to bed, and hoping for a better day tomorrow :)



 

Home...maybe?

Emily is doing very well. She has made tons of progress this week!

She is up to full feeds. Thank. God.

We are replacing her g-tube drainage with pedialyte, and that is going well too. She tolerates 50 and 60cc flushes with no problem. I, on the other hand break out in a cold sweat when they start them. I am so ingrained with Abby's non- tolerance of volume, it's hard to think that Emily will do just fine. She does though, and it feels like a miracle. I know it's not for her, but intimate knowledge of how very wrong things can go, leaves me astounded that it ever goes right.

She finished the antibiotics for the intestines, but none of us are convinced the infection cleared. We decided to wait and see if she gets worse. That's slightly risky, but we don't want her on antibiotics she doesn't need.

I thought going home Monday was a possibility again at the end of the week, and yesterday it was a probability, but today she didn't feel as well and her weight has been flat for two days, with a slight loss today. She has to gain weight to go home. She's been on the lipids too, which should have helped with that. They stopped those tonight. Her weight would have to be up tomorrow, and I doubt it will be. She can't tolerate peripheral lipids anymore because they are burning her veins. They are very irritating, so very site that ran them is red and swollen. Poor baby. I just can't let them run through a regular IV anymore.



So, I'm not sure if she stays tomorrow, exactly what they will do to help with weight gain. We'll see. It may just take time.

She's in good spirits and has been a real trooper the whole time. Even though getting an IV in her has been awful this time, and she's needed 2 at a time. Transport (the experts) have been putting them in. Friday it took 5 sticks for 2 IVs. She's had them in hands, arms, feet, and legs. If I had realized how long she would be here, I would have begged for a picc. Shoulda, woulda, coulda.




Overall, she is very, very close to going home! I just can't wait. I left today to get the house ready, clean some, and rearrange Emily's room and supply closet to prepare for this new way of doing things. It's still such a bummer that things have to change, but such is life.

Please pray for Jeff and I to know the right things to do for her, and that God would not allow us take her home too soon, but still, very soon ;)


 

Better

Emily is slooowly getting better. She is tolerating her feedings well on the new formula and schedule. She was more like herself yesterday, and today we actually took a little walk off the unit. She is weak, and it will take some time, but she seems to be turning around.

She had her first weight gain today. Thank you God!! She lost 6 1/2 pounds total. She was 68 pounds 4 weeks ago, and yesterday 61.4. It is so hard to see her so thin. Her little bones poke out and she needs to be turned constantly to keep her from getting too red.

The good news is she's better. We still have several things that need to happen for her to go home.
-she has to tolerate water added to her feedings instead of IV fluids to supplement. This raises the rate, which I think she'll handle fine, but we'll see.
-she needs to recover from infection and have normal poops :). This is very important because she losing lots of fluids, and not absorbing as well with that going on.
-she's draining a lot off her g-tube which needs to be replaced with flushes in her j-tube. We haven't even started to deal with that yet.
-they started lipids (IV fat supplement) to help with weight gain. She has to come off them, probably next week, and then maintain weight.
- she needs to consistently look better without big swings in her blood pressure and temperature.

Overall, these are very doable goals! They just take time. They take up our summer time :/ I'm still unhappy about it, but resigned to the idea now. If everything goes perfectly, she will go home next week some time. I originally thought Monday, but they extended the lipids through the weekend, so no. I think Wednesday is the earliest we could go.

Here is Emily looking happy, but with a bazillion things on her IV pole~
They gave her that blanket here. She loves it. Those wild colors make her happy! I don't. That makes her love it even more :)




 

Disappointed

Well, things didn't go as planned today. Emily didn't handle the formula we had her on well past a certain point. We tried twice, but she seemed to have pain and cry when the rate went past a certain point. The good news is, she was really close each time, but not quite close enough. The infection might be complicating feedings too.

She has lost so much weight in such a short time (almost 6 pounds now). They are starting her on lipids with her IV because they can be given through a peripheral line, but if she isn't able to go all the way up on the new feedings by Wednesday, they are going to place a picc line and start full TPN. Please pray she tolerates feedings. She digests just fine, but she's never been fed 24 hours a day before and seems to struggle with the constancy of the feeding schedule more than the volume. They did change the formula today, so hopefully that will help.

If they have to start TPN, we will be here a few more weeks.. If she can tolerate feeds, we could go home by the end of the week, or early next week.

I went home for a few hours tonight because I just needed to get out of here. I can't do this again. I cant handle the whir of the iv pump as background noise for weeks. I am so sad that another summer is spent in and out of hospitals.

I miss Abby so much, and all of this belly talk is killing me. Most of the time when I'm here, I can't even think of Abby and deal with Emily too. I have to push all of that grief aside and deal with the living. Then, something small makes me think of her, and I see her smile in my mind, and feel like I've lost her all over again.

It all seems so unfair. I know life never is, but sometimes, for some people it seems exceptionally unfair. I walked away from Hannah and Sarah again tonight and again, hated seeing the looks of concern mingled with resignation on their faces. They looked so very young for such knowing, aged expressions.

Even if everything else goes perfect, it will take time and energy to get Emily back to where she was. Remembering where we were this time last year with Abby makes me thankful that Emily can get better. I guess I just feel so upset that she has to.

Disappointment is overwhelming tonight. I'm praying for my girl as we go to sleep, for healing for her little body, and for God to replace this disappointment we all feel with peace, hope, and honestly just a little teensie glimpse of what in the world He is doing!



 

Emily update

Emily is FINALLY beginning to feel a little better. It seems like forever since she felt good, but it's only been a few weeks.

She has an intestinal infection that they are treating, but it has been a real pain to deal with. We are working on feedings, which she's doing great with, but the infection is causing lots of GI symptoms that have kept her feeling really bad.

The j-tube went in with no problem, and is now running. She should be up to full feeds tomorrow. Yay! We are expecting her to go home early next week.

All week, doctors mentioned TPN, but thankfully, that seems to be slowly sliding off the table. Em lost 5 pounds through this. 5 pounds is huge for her. It's half of her weight gain for a year. She will put it back on but it will take time. It's really not fair for her to lose so quickly what takes months to put on.

Jeff and I are emotionally drained. Only 10 months after Abby went to heaven, we just weren't ready for a health crisis with Emily. All winter, I felt so grateful that we had a break from hospitals. Emily was so healthy, and doing better that she had in along time, but one thing happens and I am reminded how fragile she is. I am also reminded how different she is from Abby. She digests food. I keep telling myself over and over this is different. Emily keeps telling us. She handles her food just fine. She is just sick now.

She's very, very weak, and again unlike Abigail, tells us clinically that she isn't well. Her blood pressures have been low, her pulse ox drops, and her temperature runs low when she feels bad. Yesterday, all of those numbers inched up. :)

I went home last night for he first time in a week. Home is wonderful! I can't wait to be back. Just a few more days. I can make it. The girls, Jeff, and I just hung out with Emily today. We all relaxed a bit. Hannah read to Emily from "The Sweet Life of Bees." Emily loved it, and I loved time with my family together.








We're almost there. Please pray that she recovers quickly from here on out, and remember my nephew too. It looks like he and Emily might go home he same day!


 

Good and bad

When I left off last, Emily was doing well and we decided to make our trip to Florida. Wednesday morning, we drove 10 hours (took us 12) to the panhandle/Destin area. Emily did very well in he car. It just rained the whole time.

Thursday was rainy, but calm. She are great and was happy. Friday was more rain, but we decided to go out for a while. We hit the panama beach pier before it started to rain. This is our only vacation picture.



We were went to Fridays for a quick lunch, where the first signs of trouble appeared. Emily refused to eat. I figured she was just having a bad moment. We were an hour from my in laws house, so we headed back. That was one of the longest hours of my life.

She started retching and gagging horribly. Constantly. I had to take her out of her car seat and wrap a seat belt around her in the back as tried to throw up every single minute for an hour. She was ice cold, but sweating. Her eyes rolled back in her head. I was scared out of my mind. I wold have called 911, but we were in the middle of nowhere, and we had to get home.

As soon as we got back we rushed her in the house and hooked up a g-tube to vent. She has a Nissen for reflux, and can not throw up, so venting the tube allows her to drain off the stuff that made her sick. She immediately drained about 10 ounces of nasty green stuff. That's a lot for her. I gave Zofran and called the doctor. We were about 2 hours from the closest pediatric hospital. The doctor suggested we try to get home, so we did. We pack up the car, and headed out the next morning.

24 hours in the car, 17 inches of rain, 4 days and one sick girl.

I couldn't get food or liquids in her for about 30 hours, so we came straight to the hospital when we got to nc. She was admitted, started IV fluids, and then trying to figure out what was wrong.

First they told me it was constipation. It wasn't that. I threw a fit I'm not sorry about, and they looked further. She looked awful for two days as her belly continued to drain green. After what we just went through with Abby, we were living in terror as we watched Emily so weak and sick. She had vey low blood pressures, she didn't make any urine for 22 hours. They scanned her bladder, but it was empty. She was very, very dry, and it took a few days to get on top of fluids. Today, she finally looks better.

Yesterday, she had an upper GI series that showed SMA syndrome had returned. That's what she had 2 years ago when she and Abby were in the hospital at the same time. Basically, the mesenteric artery and aorta smash her small intestine causing a blockage. It doesn't require surgery because her own body fat will eventually lift the artery off her bowel. More good news is that once the dye moved past the blockage (lying on her side, almost stomach, it moved through) her motility and absorption are perfect. Her belly isn't sick, she is just sick temporarily. She's not Abby.




Today she is going for a g-j tube. We will have to formula feed for a while and put some weight on this kid! It's very frustrating for me. We feed her all the time, and she is a great eater, but the pounds just don't come easily. Then one little illness and it's all gone.

I'm thankful for answers, and the ability to fix this without surgery. It's been a very trying week for us, but finally heading in the right direction. Whew!



 

Doing well

Emily is doing really well. She will probably go home today. I'm excited/nervous about that. She and I really want to leave for our family vacation, so we are pushing past this thing as quickly as possible.

We are planning to go to the panhandle area of Florida to visit Jeff's Dad and stepmom, then head over to Orlando for a few days. I'm worried all of that travel is too much for her, but we are going to try if they discharge her. We can always head home if she's not doing well. I just don't want to end up in a hospital far away from home again :/

Catching up on rest...




I finally slept some last night. It's awesome to sleep 6 straight hours after days of being awakened every hour. I haven't packed a single thing, so if we get out of here, I'm going to need every ounce of energy those 6 hours gave me!

I'm hoping and praying for a good day :)



 

Not how I planned to start again...

I've been away from blogging for a while taking time to enjoy my family.

I wasn't sure if I wanted to keep writing, but the truth is I love it. Words fly around in my head as everyday life goes by. I missed putting them on cyber paper.

We've been busy, and I really want to catch up, but I can't today.

Many of you know that my sweet nephew was injured a few weeks ago in a lawn mower accident. He is only 5 years old, and lost a leg. It's been very difficult for our family to see this beautiful little guy injured. He is doing better after a tough course and about to enter the "rehab" phase of recovery.

He was in the same hospital Abby was this time last year. We are seeing the doctors, nurses, and surgeons we worked so closely with again. To say its been emotional is an understatement. I've been thankful to enter this hospital when it wasn't for one of my children, even though we would give anything for my nephew to be at home playing the way he did before. I wish I never needed to set foot in a hospital again, but that's just not how my life works.

I really think God used this awful tragedy to begin to heal some of the raw places Abby's death left. I didn't think I could ever be here again. I was sure that if Emily got sick we would need to find a different hospital. Spending 3 weeks here visiting my nephew, I thought maybe I could be here again, which is really great, because I am here.

Emily isn't super sick, but she has struggled to tolerate feeds and been vomiting for 5 days. She needed IV fluids, some tummy rest, and we should be out in a day or two. She looks better already after having some IV fluids. I am SO bummed to be back, but thankful that God prepared us some.

We are supposed to leave for vacation Tuesday, so I hope she gets out of here soon :)

Come on Em! Get better!!



 

Kidspath

Jeff took Hannah and Sarah camping (with his sister and her family) Friday night  into Saturday last weekend.  In a tent.  It rained. 

I should end this post now.  His camping trip lasted about that long.  Hannah and Sarah were not impressed, but I think that was always their intention toward this trip.  We are not big campers.  Emily and I stayed back and cuddled.  We reclined, ate, watched TV, and chilled out.  Happy times for us as the rest of the pack attempted to live off the land.  Let's just say they came back on the early side.  It was always going to be a short trip because Sunday we wanted to attend the memorial service KidsPath holds for its families. 

It was beautiful.  It really is a wonderful place.  I can't say enough how thankful I am  for them walking us through last year.  Without KidsPath and our awesome pediatrician, we would have probably had to put Abby in the hospital for her final days.  That would have broken my heart, so I am forever grateful for them.

The memorial began in the chapel where Abby's primary nurse lit a candle for her, then a choir sang a beautiful song. My IPhone pics are a little grainy, but I still want to include them.

 Then we walked over to the fountain where we placed water lily's in honor of our children.

Hannah placed ours.

We went inside for a reception and to paint tiles that will be a permanent part of KidsPath. The colors will be much brighter when after it's cooked.  Weird sentence.

I love this one with me helping Emily paint

Sarah made this one.  Very artistic, I think.

The rest of us worked on this.  The blocks are Lego's, Abby's favorite.

The will be fired and glazed, then placed in the hall.  I love them and can't wait to see the finished product.

After the tiles, we went to the garden where a metal sculptor made a butterfly for Abby and all of the other little ones that went to Heaven. 

It was a beautiful day, and a nice way to remember our sweet Abby.  This weekend we will visit her grave, and bring some bright flowers for spring. 

It's been about a year since we began with KidsPath, and a perfect time for me to see the nurses again.  Sometimes when I am alone with my thoughts it's hard to remember that a place existed where we felt like the best thing for Abby was to let go.  When I miss her so much, it doesn't seem like it could have been real.  A conversation with the one's who walked that road with us helps me to know that we still would have been at the same memorial, no matter what we did. 
We tried to let go with as much love, dignity, and respect for her as possible, and I hope and pray everyday that we did exactly that.

He heals the brokenheartedAnd binds up their wounds. Psalm 147:3 (nkj)