Reflections on 13 Years of Extended Life

Thirteen years of ups and downs, and God is faithful through it all. My life is abundantly blessed!

May 3rd is always significant to me because that's the day my beautiful donor passed away. That's the day I know her family is remembering their special daughter and missing her extra. I had the opportunity to meet my donor's amazing mother several years ago, and it's a blessing to stay in touch with her and share my life, the life that I get to live, because of her family's decision to make Ashley an organ donor even while they were right in the midst of experiencing loss.

If you would like to read about Ashley, or send some love her family's way, here is the website they put together to honor her life:  In Loving Memory of Ashley Bergman

May 5th is significant, because it is the day of my liver transplant in 2001. Technically I went in to surgery about 10pm on May 4th, but it was a twelve hour surgery, and most everything happened and I woke up from it on the 5th. Yep, Cinco de Mayo! But no margaritas here :)

It is always a day of remembering those weeks so sick in the hospital, then one morning the whole transplant team filing into my room to tell my mom and me, "We have a liver for you." That day was a whirlwind of preparations but also a fog covers the memories, no doubt because of the "survival mode" my body was in, and the pain meds I was taking at the time. I remember (or at least I'm told about it) we watched "You've Got Mail" in the evening, and then it was time. About 10 pm I gave my goodbyes and hugs, a little wave, and they wheeled me away to the OR. I think I had the lucky end of the deal, going off to a twelve hour nap (as intense as that surgery is, praise God for anesthesia), while my family and friends and pastor and neighbors waited, took shifts sitting with my mom, prayed, talked, dozed, and waited.

This is a photo of the scrapbook page showing me working on a craft project in my hospital bed a day before transplant, and a photo of my old [nasty!] liver. A couple of family inside jokes: we always say my old liver resembles a barbecue chicken. Yikes! And I only have pictures of my old liver because I asked if I could keep it in a jar after surgery (Lol!), and of course they said no, but to make up for it my transplant coordinator brought a disposable camera into the OR.

I heard stories that my incredible surgeon, who is still dear to us this day, had operated on a baby boy for hours before my surgery, got a break to eat a hamburger and take a shower, then went in to start my operation. They had to "call for backup" from the doctors over at the university hospital (I was at Children's) because my sick liver was so enlarged from scarring, they could hardly get it out. A break or two I'm sure they took in those long twelve hours, and my transplant coordinator nurse would go out and update my family. Finally, the new liver was in, I was all sewn up, and off to the ICU/recovery. I don't know if it was shortly after that, about 10 am May 5th - or if I slept a whole day and it was May 6th, but I have a memory of waking up with the breathing tube still in my throat and being so upset because that was my one main fear going into this surgery: how do you not breathe when you're awake and able to breathe? how do you let the machine take over when you're conscious and want to do it on your own? And they'd assured me, "you won't even know it's there, by the time you're awake it will be out."

Well, of course I don't remember the experience now, so however traumatizing it may have been, it's all no big deal and a funny memory today. But at the time, I was getting so agitated and trying to talk, the nurses gave me a notepad and pen -because talking is what you DON'T do when you have a breathing tube in your throat and lungs- I was determined to get my message across. So what I have now are these funny pieces of notepaper in my scrapbook, with scrawly writing where I had kept beginning the sentence, "Why am I awake?" or sometimes, "you said I wouldn't be awake!" but only half the words were composed before they trailed off the page in a squiggly line, because I kept falling back asleep! It is very amusing to me now :)  I'm glad the nurses saved those pages!

June 2001 - home at last!

Me and my friend Christine - we've known each other just about our whole lives! I look back at these pictures and think, "God bless all my visitors, EVERY time I've been in the hospital, for not walking in, seeing how awful I look, and fainting or making a terrified face or just plain running away! Courageous friends :)

My transplant is such a huge piece of my testimony, of putting my trust and my life in the much more capable than me hands of Christ. When I was recovering from my transplant, about three weeks post-surgery, in my hospital bed in the dark by myself, the fears started to creep in. I had made it out of surgery, but what about next week? Next month? Years down the road? There is so much to learn before and after a transplant, about caring for your suppressed immune system, staying away from germy risky places and sick people, memorizing your boatload of medications and their names and doses... Hand washing, what pets you can and cannot have, wound care, lab blood draw schedules, post-surgery check ups... Information overload and for a detailed, bottom line person like myself, I was letting it all get to me.

I had asked my mom to bring my Bible to me that week, and I had put it in the drawer of my little over-the-bed hospital table. When these fears started creeping around, I had the idea, "get out your Bible."

I think back on this as a remarkable thing. Because, while I had grown up in church, I had not really understood or was even aware that "following Christ" as an active, constant, rhythmic lifestyle was a 'thing' that people did. I went to church because I wanted to, not to check a morals box or to feel good, but I didn't {for several reasons I see now} realize that it [LIFE] was all about Jesus, and that Jesus can and will and wants to be involved in every moment of our lives, not just in a churchy building or event.

So back to my dark hospital room ... I got out my Adventure Bible in it's canvas zippered turquoise case ('90's Sunday school trends, anyone? :) ) and opened it up. I think I said a prayer, asking God to help me, that I was afraid and needed some encouragement. And wouldn't you know it, the page my Bible opened right to was Luke 8, and standing out on that page in bold purple writing was Luke 8:50 - "don't be afraid, just believe." (NIV)

See, my little Adventure Bible had these purple boxes along the columns where they'd take a verse from that chapter, and enlarge the font and make it a page feature. Some of them had a little bit of kid-life-applicable commentary. This verse happened to be out of the story of Jairus, who found out his daughter had just died, and Jesus responded with assurance, "Just have faith, and she will be healed." (NLT) He went back to his home with him, and raised the daughter back to life. It's a great story, but it was just that first verse that was bolded in my little kids Bible, and that little verse jumping up into my face and down into my heart as an immediate response to my little prayer of, "God, if you're here, help me not be scared. Because this feels scary." 

That event sticks out in my mind as the beginning of my "real" Christian life. I went to summer camp a few months later and had an even closer encounter with God, another one of those, "yep Emily, I'm definitely real, and I see you and hear you... what are you going to do about it?" events.

All that to say, my liver transplant has great meaning to my family and friends and most of all to me, as my "second birthday" and my "new lease on life," and the start of the healthiest, most exciting decade I've yet lived. But it also has great meaning as a special piece of my testimony, and a spiritual birthday of sorts, and an incredible opportunity God gave me to face my mortality, and respond to that with Him or without Him. I'm so glad I reached out to Him and jumped into this journey of faith. No regrets, ever ever ever!

Because of my donor and my transplant, I have been able to do so many special things. The first is obvious:

1) survive. Then there's a lot more...

2) graduate high school

3) go to college - and in so doing, 4) meet lifelong friends, 5) fulfill a dream by being on the crew team, and not just as a rower but a coxswain! Incredible lifetime memories there!

6) advocate and speak about organ donation

7) travel with youth choir on two mission trips

8) serve on a youth ministry team, meeting amazing people, learning from great examples so much wisdom about life, still having an impact on me today,

9) met my husband on said ministry team :)

I don't think we were married yet here, but just a few weeks away from the wedding. My amazing man always by my side. Here we are playing cards during my first Remicade treatment for colitis

10) get married!

1/27/07

11) enjoy the ups and downs and wild adventures of our married life, me being sick for far too much of the past seven years, but experiencing so much blessing together, and Ry never leaving my side,

March 2007, our second "monthaversary." What IS it with us and spending special occasions in the hospital?!

12) moving and buying a house, and sticking it out and learning so much about contentment, patience, choosing our battles, as we faced crazy mold issues and unplanned complete remodels of every room in our home -and we're still married and friends after it all! ;)

13) getting planted at the best church in the world where I've gained the wisdom needed to survive these last few chaotic health-challenged, finance-challenged trying years,

14) experience pregnancy, once very briefly, and another time to full term :)

A week before we became the Three Musketeers! August 2011

15) Give birth to an absolute miracle baby girl, Victory,

16) and... I realize there are just too many great things to list. 

But, Not because I've had the endurance to run a marathon yet and add that to my list (running a marathon has been on my bucket list since high school cross country days), or because we currently have the resources to travel to beautiful places that we plan to one day, like Hawaii, Austria, and our own USA's Yellowstone Park (more bucket list).

But there are plenty more simple things to list, because I choose to find joy in every day. In every experience...

One of my greatest heroes, someone whose wisdom I respect and glean all I can from, has taught me this very important clarification to the well-known verse 1 Thessalonians 5:18. It's great advice for life, these three instructions in verses 16 through 18: Rejoice always. Pray continually. And here's the kicker a lot of us don't like: Give thanks in all circumstances. The important clarficiation is, he doesn't write, "Give thanks FOR all circumstances." He writes, "Give thanks IN all circumstances." 

One of the simplest ways I remember this is from a story I saw once about a forest fire. The forest was just decimated. The wildfire had burnt everything green and beautiful away. The wildlife was gone. It was a beautiful sanctuary turned ugly. And then the focus turned to a little green bud, shooting up out of the ground. New life after a tragedy. Fresh, hope-filled spring coming up through the ashes of heaviness. No one would stand there and say, "God, thanks for the wildfire that ruined this landscape and killed the life that was here." That would be crazy! But obedience to 1 Thessalonians 5:18, and learning to live in that flow of noticing the praise-worthy things, and expressiing gratitude for them -- that person would stand up and say, "God, this forest fire made my heart sink. But I see this flower springing up from a silent, lifeless forest floor. And it lifts my spirits, and makes my heart leap. Thank You, God, for this beauty in spite of the ashes."

We all face seasons and experiences in life that are so hard, so sad, so gut-socking and painful. But, our greatest power is our power to choose. Whether your life up to this point has been a nice coast, or it's been a tooth and nail gritty fight to survive, I challenge you to choose gratitude. "Give thanks IN all circumstances." 

Where to Begin? A Summary of Recent Events

I admittedly wait long periods of time between my posts recently, and the farther apart they are, the more overwhelming it is to try and sit down and write out the most current events. I thought that was just due to trying to remember what happened, the farther in the past it goes. Now I think it's also more about how time keeps moving, more things keep happening, the list of items to blog about and update grows longer and - recently - weightier.

My last post was about getting ready for "Plan B," an upgrade to my PTBD biliary drain - to do angioplasty of the bile ducts with a balloon and open up one of the main ones that has serious scar tissue narrowing. I had that procedure done at the beginning of April.

Here I am, ready to go... little did we know it would be about six more hours wait ;)

I came out of it with a French drain tube doubled in size. The doctor exchanged the 8 gauge drain tube I had to a 16 gauge. Wooey, the first look I got under that bandage made me grateful I'm not a wound care nurse, but much more capable, not as easily grossed-out people are in that profession! :)

I was in a groggy state for a day and a half afterward, but it was so good to be home!

That means it has been a whole month with this larger PTBD, and unfortunately, no changes. I tried capping the drain on two different occasions, following doctor instructions. It went well overall; right now it's capped. I was losing way too many electrolytes in the fluid output of the drain, so I had to. I'm still battling those low levels of magnesium and potassium, as well as working really hard (it's not easy, for some reason!) to keep drinking water and other wholesome beverages, and eat good meals. It's a bummer that there were no changes to my lab numbers after this larger drain; even when the drain bag was attached, my bilirubin was still up at 19. Yikes. And the jaundice has stayed the same, and itching has returned WORSE. Ah if I could pick pain or itching, I'd choose pain. Itching is slow torture!

As I mentioned, there haven't been significant or really even noteable changes, improvements, to my lab numbers. This is the reason for my next big piece of news...

I'm glad we got this news the week of Easter. It made everything easier. I cherish the Hope of and in the Resurrection.
Always - Only - Jesus.

I've been referred to the University for another liver transplant.

(:sigh:)


One of my liver doctors sent over the referral, and I'm just awaiting their call one of these days to set up all those crazy pre-transplant evaluation appointments. It's possibly going to be a busy summer... if only it will be full of things like swimming lessons and dance classes with my Victory bear, rather than doctor appointments and uncomfortable procedures?? I will keep hoping and believing.
It's something that's come up in conversation numerous times since about four years ago when my team started noticing that the PSC (primary sclerosing cholangitis) may have recurred. But it was never so definite or concrete as now.

This is a picture of the imaging from my second-to-last procedure, when the first drain was "installed." They got it in and were able to inject dye to illuminate the ducts (the darkened, tree root looking things).
There should be so many more, especially on the left...

That is one mass of sharp, irritating to my skin blue stitches. And one big drain! I flush it with saline like this once or twice a day.

Just for the record, heading into another twelve hour surgery is not what makes me take so many deep breaths, and need time to process these developments, and soak in the Word and worship to be fueled up for those inevitable Mind Monsters. It's not that that scares me. This time I would be heading into a transplant not as a light-hearted teenager, but as a wife and mom to a toddler. I want to be here for them. Always. And a waiting list of approximately, at all times, 17,000 people needing a new liver, versus only the 6,000 per year that receive one... well, do the math. (Source)
Of course this is a fear that I don't dive in too deep to, because my heart and that Holy Spirit voice thankfully always tug me back to earth and say, "but Emily, BUT GOD. This may look daunting, BUT GOD. He can do anything, and He wouldn't have brought you this far to leave you or let you be done living now."

So anyway, that's the biggest news I had. My days are so full of joy and memory making, it's not derailed me too much, just mostly made me live all the more intentionally to soak up the everyday moments. Hobby Lobby had this painted sign I wanted to get for my living room at one time (coincidentally, it's not there anymore). It said, "There is always always ALWAYS something to be thankful for." How true that is!

I had a glorious nap last week, later than usual, and woke up to a gorgeous sunset...

A couple Sundays ago, we took a short drive to the Peninsula and found a secret children's garden. Dreamy looking mature trees, and little fairy gardens someone's made. Miss V was on the hunt for Peter Rabbit :)

The Secret Garden

Momma and Miss V made it to Costco all by ourselves the other day! What a fun time and a big accomplishment :)

I experienced a huge glimmer of hopeful progress the other day. My eyes became more and more white throughout the day, and by evening they were whiter than they'd been since Christmas! Unfortunately back to very golden the next day, but that event sure was encouraging. Looking for more of those in days and weeks to come!

We always enjoy the beautiful garden at the clinic. What beautiful flowers and trees we get to appreciate because someone works very hard at planting and tending.

I've been marveling at God's grace and sustaining me to be able to keep up with Miss V around the house, and I'm on a baking roll this week as well! V and I made grain-free "puffy oven pancakes" on Monday, and I whipped up a batch of sugar cookie dough from a gluten free Hodgson Mills mix. We never got to make Christmas cookies.... or football/Superbowl cookies... Valentine cookies... or shamrock cookies... or Easter cookies. Despite me getting everything including the appropriate cookie cutters out on the counter, every time I've been too tired. Well we are going to make our Easter/spring cookies, no such thing as too late :)
Late last night I couldn't sleep and made coconut flour blueberry scones. (Yep we're still very much gluten free around here. We added back grains last year when I needed to put on weight desperately. Phasing them out again little by little, because all three of us do better without.)
Then today I made a rhubarb crisp, grain free, vegan, refined sugar free, with local rhubarb from a farm down the road. Delish! I have missed baking very much, and can't believe how much I've been able to do including cleaning up afterward, doing multiple loads of dishes and laundry each day, hanging with Miss V and watching a movie a day and doing crafts with her. Every day I have strength and energy to keep up and make life fun in my home, I am SO thrilled and grateful!

Speaking of energy levels and miracles...
Another hurdle I'm in process of jumping is some wonky blood and bleeding issues. My exhaustion level didn't fade enough once I capped my drain last week, and I had a hunch about not just electrolytes but also my blood counts. Sure enough, my doctor reported back to me that my Hemoglobin was at 8 and Hematocrit 26. My Prothrombin time and INR (both indicators of the time it takes for your blood to clot) are double what they should be. I actually had to wait a few hours while I was infused with three units of Plasma before my procedure earlier this month, because my numbers were past their cut off for a safe procedure.
It has to do with the challenges my liver is fighting through, and the state of sickness it is in; PT and INR rise. Not much you can do, I am now taking Vitamin K but really I just need healing! I'm really starting to feel it and noticing that it's not really improving.
Oh more blood drama! It's been almost a full year since my intense war against Autoimmune Thrombocytopenia ended and [I believe] God healed me and put that nasty disease into remission forever! But I'll never forget those trips to the ER hanging on as I was on the verge of passing out and my skin was so white and cold.
I got my blood drawn yesterday evening to check Hemoglobin, Hematocrit, and to do a Type and cross for a blood transfusion. It's inevitable that I'll need one within a week (actually, it's been a week since my labs were drawn last and my doctor informed me of the electrolyte and blood situation and my need for a transfusion.) but the Infusion Center where they do blood is so booked up, I can't get in until Monday. I do NOT want to end up in a critical situation ever again due to low red blood cells, so I figured checking today would be a good idea, we'll see where my numbers are at (knowing I'm still having bleeding issues - dumb gut ulcers!) and if needed, the team will go ahead and put me in the hospital for a short stay to receive a blood transfusion that way. I'd much rather give up a weekend day doing that then have to rush to the ER late Sunday night because the numbers got out of control.
Please say a prayer for clear results and a great plan of action. And as always, a blood match for me that's clean and healthy!

I think that is the summary of the major things going on. It's been a busy month - anyone else feel like April just FLEW by? But I am excited for May; it's my "happy month." :)
I will celebrate thirteen years since my liver transplant on Cinco de Mayo the 5th, my third Mother's Day on the 10th, and my 30th birthday at the end of the month! It's a good life. Never let go of your vision or your fight.

And don't take life or yourself too seriously! ;)

Right?? :)
Interesting to me, my hair is getting back to its curly, wavy state. It was like this before my liver transplant in high school, and changed to being mostly straight when I was pregnant with Miss V. Now, the curls returneth!

Here is a group of statements I wrote out to myself last week when things were feeling overwhelming, lonely and anxious. A declaration:

"I choose to live.
I choose to keep moving.
I choose to take one day at a time.
I choose to not quit.
I choose to trust Jesus.
I choose to believe the enduring, unfailing promises of God.
I choose to look high and low, far and wide, to find any joy I can find in the most difficult of days.
I choose to hope.
I choose to stay in the fight.
I choose to be fully present in the moments for myself, my daughter, and my husband.
I choose to thank God in every moment.
I choose life.
I choose joy."


And here is a beautiful prayer I discovered; I've heard and read parts of it before, but wanted to see it in its entirety. I want to print it out and carry it in my purse with me to remind me of these truths.

St Patrick's Breastplate

Christ be with me, Christ within me
Christ behind me, Christ before me
Christ beside me, Christ to win me
Christ to comfort me and restore me.
Christ beneath me, Christ above me
Christ in quiet, Christ in danger
Christ in hearts of all that love me
Christ in mouth of friend or stranger.

(390-461 A.D.)

Little Bit Forward, Little Bit Back (or, Stinky Bag of Bile on my Hip)

It has been just over a month since I had the procedure to put in my PTBD (biliary drain), and I have not known how to write an update post. There is so much to communicate, or so little.

Some days I feel like writing out a post the length of a book chapter. Other days, I just want to write a sentence and post a photo, and leave it at that.

Things haven't gone quite how I expected. In several ways. 

I am always seeking a healthy rapport and clear communication with my doctors, and usually we all achieve that. But in the days before this procedure and also in the recovery time, that did not go as usual. Working with some new doctors who do not know me and my medical history quite so well, and don't realize that I know my way around my chart, my health and the way things work...

About to go into the procedure room.
I think this was right before the nurse gave me a dose of IV Benadryl.
Yikes that stuff is trippy! :

 Based off the first explanation of the PTBD back in January, I had different expectations of how the procedure would go. I was sitting there in the pre-procedure room, after it took the nurse twenty minutes and two painful attempts at putting in an IV (I'm normally a perfect IV and lab poke patient, but she picked an odd area of my arm and I was so dehydrated from the NPO/fasting before the procedure, it turned into a not fun time.) Once she got a line in, she brought in consent forms to sign, and in reading them I started to think I was in prep for the wrong procedure. It did not sound like what my hepatologist had explained to us. I had to wait almost a half hour, on top of the half hour we'd already been waiting, for the doctor to come in and answer my questions. He reassured me enough by his answers to my questions that he and I were on the same page.

Turns out, we learn afterward, not quite. I won't get into the details. At least it was a successful procedure and I now have a drain that can be used in ERCP to access bile ducts for things like putting in a stent, etc. Also, it's been allowing some bile to escape through the exterior line to a drainage bag connected at the drain tube end, which I have attached at all times, flush twice a day and empty about as often.

Sunday morning, first morning at home after my procedure Friday. I felt great that morning!

Upon discharge from the hospital the next day, it quickly became apparent that we weren't given much information that we actually needed to care for this new appendage I had, and hardly had the supplies to do the physical care, or the knowledge to know what to look for as a concern. I gave it some thought for a few days, as I wasn't in the mood to urgently drive up to the hospital to see the same doctor and receive more vague instructions, or be sent to the ER by my much more concerned doctors, plus I was in a LOT of pain. (The pain, I figured out on my own in week two, came mostly from the drain going into my abdomen right above my diaphragm - with every breath in, it would push on the tender area and hurt so much! Also, I discovered, if I ate more than a small amount of food and did not space out my meals into tiny ones that took all day to eat, my guts full of food, which run right under the exit wound, would push on it and cause quite a lot of pain. Ouch!

The drain was put in the middle of my abdomen because it could not go on my right side like they normally put them. I got to see this on fluoroscopy film later, it was pretty cool to watch the moving images in 3D of the right biliary tree spinning around on the screen. It was not cool to see how bad things look - my right sided bile ducts are nearly defunct. Perhaps a more blunt doctor would say they are defunct. They are shrunken, twisted, knobby, narrow tubes that look like knarly strings of yarn that a cat or child got to and twisted or tied knots in repeaedly. Or, they also made me think of a compacted, spiral strand of DNA gone very wrong. Basically no bile gets through them. 

What amazes me is, that they could get so bad without much indication. It must have happened over several years, and the only sign I've had that something was funny is the dull ache I sometimes had and have in my upper right side.

The main point is, it's been nearly five weeks since the procedure, and we're just now figuring out that the site may be infected. My recovery took much longer than the doctor expected. I have been the most proactive I could be, I just kind of fell through the cracks on this one. The good thing is that Ry and I spoke with the hospital administrator in charge of patient care, and we were able to give great feedback.

I'm not a whiner, I'm not a complainer, and I hate raising any negative point without having a solution to offer as well. But in this case it just happened that multiple things were dropped, all for the same patient (me), and it can at least be a learning experience for all of us.

The good progress that was made is that for several days after the drain was put in, what seemed to be stones (bile stones? I don't know what they're called when you don't have a gallbladder) were coming out into the bile bag several times a day. They were not large, but it was good to see that they were coming out, especially since I didn't know they existed! Also, my bilirubin (albeit slowly) started dropping almost right away. My eyes looked less green/yellow, and my skin as well. Some days would look worse and some much better.

Me and Ry doing an eye/skin color comparison.
On the left: Jaundice / Right: No jaundice!

Unfortunately, though the docs said it can take six to eight weeks for jaundice to clear after a gradual build up over time like I had, and things were slowwwwwly but surely improving... things have now plateaued, and my Bili number actually went UP last draw, and my skin and eyes are not looking too good. A little girl at the park came right up to my face as I sat on a bench the other day, and said, "are your eyes green? Why are they green? Is your skin green??" in disbelief. I told her it is because I'm extra special, and she said, "Oh! ok." And ran off to play.
 A few minutes later though she came back to stare at me. Lol! I asked why didn't she go play, and she said, "Because I want to sit by you, you're extra special. And really pretty!" So, what she lacked in personal space awareness, which really comes later in life anyway, she made up for in sweet compliments :)

It's just funny, I don't notice when the jaundice gets severe, or I tend to think I look better than I do, then we go out somewhere and people give me strange looks, and then I remember and feel bummed that, darn, I must not look too good after all, or be making progress after all.

I have a couple appointments coming up with liver doctors in the folllowing weeks, as well as more labs to keep tabs on my counts. I had to get a blood transfusion about two weeks out from the procedure, as my hemoglobin isn't staying up where it should. My hematologist thinks I am bleeding somewhere; we don't know where. Probably in my guts, though, because I had to switch back to Tacrolimus for my liver transplant immune suppression, and that tends to make my colitis flare, which would cause bleeding in the guts somewhere. The Cyclosporine which I was most rcently taking needs bile to be digested probably and keep the liver transplant safe... couldn't keep taking that when my liver and bile aren't working right. If I keep requiring transfusions, we will probably have to start discussing colectomy and an ostomy bag again as we were last spring, before the ITP went away. Hmm... carrying around not just one stinky bag of yellow green bile, but two bags, the other filling up with gut waste. Oh boy! I don't even know if I'm strong enough to go through that colon surgery right now, but we'll probably discuss it soon.

[So, what was the toughest decision YOU had to make today? Lol! I hope it was something fun like which pair of new shoes to buy, not which stinky waste bag you want to carry around with you for the next decade... or for life! ;) ]

I don't envy my doctors, that's for sure. What a balancing act they are doing, with all the body systems that are acting up, needing to stabilize and help those, while wanting to keep the still-healthy, quiet things that way. Pray for their wisdom and for perfect solutions to be thought of. I have some amazing doctors (the best team I've ever had in all these years of medical care).

I had a liver ultrasound on Thursday, to check on veins and do the biannual check for liver lesions or suspicious bile duct changes...
(Yeah I'm 29, and they were looking for pre-cancer or cancer. That's one part of my life.)
This is an every six month thing, probably more often if my liver doesn't shape up soon, and I get placed on the transplant list.
They alternate between ultrasound and MRI checks, because I opt for NO radiotion, NO CT scans.

If this is all pretty technical medical jargon and you don't understand it but would like a summary version, just leave a comment. Feel free to ask questions too. Like I said near the top, I don't even know where to start with everything that's been happening. I just started typing and here's where I ended up this time.

The main thing is, things aren't going as well as it seemed they would be, as presented to us before the procedure. But no one can control that. I got through it, and at least doctors now have an access point to my bile ducts, whereas before they did not, and were not going to put me through a third ERCP attempt to try that again.

I am taking care of this bile drain the very best I can, I am taking my meds and drinking my veggie-fruit smoothies (I crave them now when I miss a day!) to help my liver the most I can. And I am hoping for the best, declaring God's promising, and leaning on His truth! He's never failed, and He won't start now!!!

Thank you so much to the friends-that-are-family who brought us dinners for the first two weeks of this challenging time. You were our angels!

Thank you for those who continue to pray with us believing for the miracles we need, those of you who speak affirming words of health and agreeing words of healing over me, those of you who sent cards, letters, or very meaningful gifts like the custom made bracelet that says, "she chooses joy." Talk about motivating to keep up this fight! And some days boy do I need that motivation from those of you so dear to me.

Onward, forward, moving along... life goes on! I'm still here still breathing still very full of purpose and spunk - God's not done with me yet! ;)

Finally made it back to church last week, and this week I was even stronger!
These two lovies in the photo with me are my posse.
They make it all possible - their flexibility and kindness and selflessness and faith.
Yep, that all applies to Ry AND our two year old. She is amazing.
Love you two so much!

Staring Down the Monster. And, Another Big Needle in the Gut

I have been meaning to sit and write out this post since October, when I titled and saved it as a draft. So much has happened even between then and now, that this post alone could be the chapter(s) of a book.

Early October I had just had my bout with cholangitis, been in the hospital on antibiotics for several days and had a failed ERCP to try and open the strictured (narrowed by way of inflammation turned to scarring) bile duct that contributed to the issue. We'd just been emergency-moved out of our home as there was black mold discovered under the house, and I was processing all of that, along with the newest topic brought up by my liver team the week before: retransplantation.

Retransplantation has gone from being my nemesis, my enemy to be avoided, denied, and not even considered at any costs, to a dark scary monster standing between myself and the life I expected to have when I got married and became a mother, to what it is now... a very possible reality in my future.
Once you're in the position of having to face a fear, and your survival hinges upon facing that fear, you just do it. Not all in one fell swoop easy as pie, but in a graciously gradual process that God takes you through, holding your hand and opening your eyes to what you need to see.

I'm thankful to say, it's not such a monster anymore. The worst part (in my experience) of needing a liver transplant, is how helpless the waiting list can make you feel. You have no control over whether you'll get a liver or not.
Liver transplant is the most intense, physically challenging organ transplant, and livers are not easy to come by. There is no dialysis like kidneys have; there is no life support like a lung or heart machine. It's a perfectly designed filter and toxin-eliminator for the body, crucial in digestion and life itself. There are partial-liver transplants now, where a living donor is able to give part of their liver because it will regenerate, and the piece that is placed in the transplant patient will regenerate as well. However, these kind of liver transplants have a lot more bile duct scarring complications, and when you're already needing a new liver because of your scarred bile ducts due to PSC (primary sclerosing cholangitis) it isn't a great or sometimes even viable option.

*This is the perfect opportunity to make mention of tomorrow's special distinction: February 14th is not just Valentine's Day, but also National Donor Day. If you are not sure you are signed up to be an organ donor, please visit the national registry and get signed up! Follow this link and click on your home state to do so: http://organdonor.gov/becomingdonor/stateregistries.html
Here is a great little informative article just put out in a college newspaper yesterday, detailing some of the most common questions and concerns about organ donation: http://thesnapper.com/2014/02/12/have-a-heart-this-organ-donor-day/
When in doubt, just ask. As an organ donor you can save or enhance up to fifty lives. That's amazing!
There is still a huge need for registered organ donors in the United States, and especially needed are minorities. It's estimated that eighteen people pass away every day waiting for an organ. Consider it and do what you can. Ok, PSA over :)

Back to the not-so-fun scenario of being on the organ transplant waiting list, and having no control whether you'll receive the life saving transplant that you need...
This is where it becomes so important to ground yourself daily -moment by moment- in Truth. There is One who knows my future, and I'm no more in control of the ultimate destiny of my life than a healthy person that the Lord watches over. I continually find myself responding to any mind monsters or doubts that come up, "Maybe so... BUT GOD."
"But, God shall supply ALL of my needs."
"BUT GOD will satisfy me with long life and salvation."
"BUT my GOD will fight for me; I need only to be still."
"BUT GOD knows the way that I take, and when He has tried me, purified me through these challenging times, I will come forth as gold, giving Him the glory."


I didn't update after my ERCP to fix the stricture on January 27th (my guy and I celebrated our seventh wedding anniversary that day in the hospital, by the way! shout out to my amazing hubby!). That was the second attempt since October, and it didn't work. The doctor that did the procedure is world class, has decades of experience, and tried for two or three hours (I can't remember, I was intubated and under general anesthesia for it, and so sick and sleepy for hours and hours after, I missed all the reports, Lol!). But that one stinker of a sharp turn where my transplant was sewn to my bile duct, he just couldn't get the wire through that they needed to put in the stent.

Checking out of the hospital the day after my last ERCP, Jan 27th

Meanwhile, my bilirubin has gone to a level over 20 (normal is 0.2-1.2), my AST/ALT/Alk Phos (liver function tests) are very high, and I've been so jaundiced and itchy, it's been quite the couple weeks!

Orange flavored Cholestyramine, a powder that kind of suspends in water, not dissolving, and you have to just get it down because it's supposed to bind to bile and help get it out, lessening the itching and bilirubin #. It is NOTHING like Orange Juice :)

I was very nauseous for a while, and finally figured out that I wasn't digesting fats very well - that's something you take for granted if your bile ducts are working! I normally eat healthy, nourishing, Primal style meals including butter, Greek yogurt, avocados, full-fat canned coconut milk, etc. I had to curtail that whole way of life and switch to fruit and veggie smoothies twice a day.

This morning I had my favorite: Beet juice, tons of super greens, small handful of blueberries, half a banana, carrot juice, fresh squeezed OJ... Amazing how daylight minimizes the jaundice in this photo. I'll take it!

It's been fun and neat to see how that helped me to recover from the nausea and even keep up with my busy little gal most days all on my own while Hubby works, despite the crazy state of my health. God is always allowing me to live outside the box of sickness that I "should" fit into according to my labs and test results. He's so good!

Tomorrow is the day we are going in for "Plan B" - a PTBD - Percutaneous Transhepatic Biliary Drain. It will be done in Interventional Radiology, where they'll sedate me and use various radiology technologies to find the route, then using a (always too large looking!) hollow needle, go right through my abdomen, through the liver, into my bile duct, insert that handy guide wire that's resisted two other attempts via the ERCP route, and put in a stent to open up this darn strictured bile duct. The plan as it stands is to leave that stent in for up to six months to allow scarring to happen around it, creating a much bigger opening so bile can pass through. Something doctors said after that last ERCP attempt was that, at least visually it appears, most of my bile ducts "have lost function. They are strictured and scarred to the point where little to no bile is passing through."
I put that in quotes because, that's may be a fact, but I choose to keep fact separate from Truth. That report is not what God says. It's what my very smart and caring doctors say, and now that they've gotten this information, I will follow all the steps needed to pursue a transplant eval and be listed, because I am not foolish.
However--- THIS is ALSO where my mind calls forth the TRUTH--- "I walk by faith, and NOT by sight." "Faith is being sure of what we HOPE for, and certain of WHAT WE DO NOT SEE." "Though the vision tarries, wait for it; it will surely come." "NO weapon forged against me shall prevail." "By HIS WOUNDS I AM HEALED!" "AS Jesus is, so AM I in this world!"
You get the idea. :)

Bottom line: I'm not letting this "Monster" take me down. The battle for our lives - whether we're recovering from an addiction, healing from a trauma, trying to bounce back from a failed relationship, or facing some dark diagnoses - the battle begins in our minds. Fill and fix your mind on things above - Philippians 4:8 tells us, "I'd say you'll do best by filling your minds and meditating on things true, noble, reputable, authentic, compelling, gracious- the best, not the worst; the beautiful, not the ugly; things to praise, not things to curse."

If your mind has junk in it, gather it all up like you would rotting food in your fridge, and kick it to the curb! Life is too precious to spend it stuck on garbage thoughts that aren't from God. Life, and life abundant is what Jesus came to bring us - not just in Heaven but here on earth. But it's completely our option - something recently pointed out to me, was that Jesus said, "I have come that they MAY have life..." That leaves the ball in our court.
Speaking from experience, it is so worth the effort and repetition that it takes to build new habits in your thought life, to step out on your sea legs of faith and start looking past a bad report to what the Word says. It may feel completely awkward at first, but it gets easier, and more routine, and pretty soon it is your norm. If you want to do it, you can and you will!



If you've read this far, thank you for bearing with me ;)  This probably should have been two or three separate blog posts! A little secret - we haven't had a working computer in a couple years. We have an old netbook that we have to hook up to our TV to see anything on, and it gets overheated after five to ten minutes of just booting up most of the time-- needless to say I wasn't blogging from there! But about a year ago an incredible family in our world gifted us with a Kindle, which has been an absolute God-send not just for when I'm in the hospital, to stay connected and entertained, but also in parenting a two year old! ;)   And this week I was able to get a keyboard to go with it, which I'm so excited about! I cranked out three quarters of this post in no time! All that to say, you should be seeing more frequent but less lengthy posts from me in the future. SO many times throughout the week I think, "Ah, I should blog this!" usually as I'm learning something I'd love to get down in ink and share with you all. Now I'll be able to do that much more efficiently. Wahoo!



I hope I've informed, encouraged, spoken truth or life into your airspace today.
I'll close with this:

"This day I call the heavens and the earth as witnesses against you that I have set before you life and death, blessings and curses. Now choose life, so that you and your children may live, and that you may love the Lord your God, listen to His voice, and hold fast to Him.
For the Lord is your life, and He will give you many years in the land."
-Deuteronomy 30:19-20

My two greatest treasures and me at MESH Conference this week. Nothing can keep us away from the House for long! I love my church!

An Episode of Cholangitis, and, We're House-less!

Wow, things have been crazy, but today really took an interesting turn!

I came down with a very high fever last Saturday night, and the worst pain all over my body. I'm not unfamiliar with these symptoms, but it's been nearly a year or longer since they came around. Sunday I was in bed all day with the same fever, a pain around my liver area, and feeling nauseous. When Monday I awoke with the same issues, we called my hepatologist, and they said to get in the ER immediately.
We grabbed a few things, scooped up our angel Victory, and made a beeline for Seattle. God always has us covered in these situations! It was nearly rush hour, and the worst rain storm we've had in quite some time, but we got Vicky safely to her destination and us to Seattle, almost fifty miles in total, completely safe and no problems.
It ended up that I was dealing with an episode of "cholangitis." It was confirmed through the last MRI/MRCP and liver biopsy that the disease I had that ruined my first liver and caused me to need a transplant, Primary Scleorosing Cholangitis, has returned in my new liver. What is that disease all about you ask? Well, the bile ducts get inflamed, as with other autoimmune diseases (stinkin inflammation!), and scarring and infections and things happen, and sometimes you need a liver transplant because of all the damage. Anyway, this was the first time this "recurring PSC" has caused any issues for me. After tests, and specialists and hospitalists putting their heads together, they decided I was dealing with a blockage ("stricture") or at least severe inflammation in one of my bile ducts, causing an infection, hence the very high fever, chills, nausea, vomiting, and - oh I forgot to mention before, I turned a nasty shade of jaundiced yellow almost overnight.
So I began receiving antibiotics through my IV, and actually Tuesday morning already saw improvement in my lab tests. My bilirubin on arrival at the hospital was 6.9, and Tuesday it was down to 5.something, and Wednesday 4.something... Yeah God!!
But the antibiotics alone aren't what they usually rely on. I went in for an ERCP on Wednesday, expecting that they would go in with a scope down my throat, through the small bowel, and enter the biliary tree and open up the blockage with a balloon, or stent if necessary. It all sounded so simple, and the doctor really expected to get it done with no complications. The whole thing was supposed to be about 45 minutes.
Well, when I awoke from anesthesia, he came in and told us that he was unable to even get into my bile ducts. My anatomy is different because of my transplant; my "hook ups" are a bit wonky, and there was a 90 degree angle that he tried for AN HOUR AND A HALF to get the tools around, and just couldn't. The doctor was so kind, and he looked like he was about to cry, and kind of just ran off after he told us the news. I was so disappointed, because I thought for one thing, "well gee if this is just the first of these episodes, and a person with PSC deals with these ongoing for years, what in the heck are we going to do [next time]?!" And I felt so bad for my poor doctor who wanted to help so badly and tried so hard.
It wasn't such a lighthearted moment as I'm making it out to be here. It was overwhelming. Kind of devastating. You may have seen my Instagram pic my hubby posted....

So fast forward to today. I got to leave the hospital yesterday, and must be on oral antibiotics for ten more days. We're praying that the infection and inflammation dissipate completely, this knawing pain I'm having in my right side goes AWAY, and no more episodes of cholangitis occur. No sweat :)
I follow up with my hepatologist next week, and I suppose we'll address some serious topics. Like, what if this happens again and the infection moves quicker, and they can't get in the bile duct to fix it?  They did tell me not to mess around with these kinds of symptoms, because one of these infections can go septic very quickly. meaning your whole body is fighting an infection of the blood (a.k.a. even more, ICU-type serious). There is an option at that point, they said, of going in through the side of my abdomen kind of like an old fashioned liver biopsy, where they can address a stricture and infection that way. Much more invasive and risky, too. Blah. Praying that that is never needed!!!

In the meantime...

We are surrounded by the most incredible people. Have I mentioned that? I think I have, but I can't say it enough. I can't even get into how overwhelmed and nearly numb from complete awe that Hubs and I are feeling today, at God's faithfulness, and the loyalty and get-it-done type of people He's put in our lives.
We've been needing to get to remodeling our living room for quite a while. On the 15th of this month it will be five years since we moved into our house, and since we moved in, we've been battling issue after issue. When we bought it we thought it was, although old, just in need of cosmetic updates, and a lot of love and TLC. But then the issues began.
We first suffered a miscarriage in January 2009, and found mold growing on our bedroom wall and mattress just the same day. (Yeah that was an overwhelming day.) We slept on an air mattress in our living room for two months while my husband tore out that room down to the wall framing, put in insulation and drywall, and made it safe for us to sleep in there. This was in the afternoons every day, and into the late night, as he worked the 3am to 11:30 am shift back then. We got that done, bought a new mattress, and enjoyed our warm, quiet new bedroom sans-oozing-wall paint so much!

Labor Day 2009 thought we'd do a little project in the kitchen - new countertop and cabinets around the sink. No big deal right? Well, he took out the old sink cabinet, and found that the floor was rotten from a previous leak... down to the joists. We then had to dive head first into an unplanned, unexpected, complete gut job of our kitchen, floor joists to ceiling torn out. Everything in the subfloor was rotten and walls were crumbly old plaster and ... short story, that was a two month adventure of microwave cooking and living in even less than our house's 650 square feet offers, because all of our kitchen contents was in our living room as he worked on it. Again during afternoons after working eight hours a day at his full time job.

When I got pregnant with Victory, we knew we needed to redo the second bedroom like we'd done our own, as it didn't have insulation in the walls, and was musty and the plaster walls clearly needed to go. Another project for my awesome hubby and his not-so-free time. When we tore out the wall between the bedroom and the bathroom, there was the creepiest looking, gross, anenome-armed, tendril-waving, nasty-colored mold I ever could've imagined, on the inner side of the bathroom wall. You could see that there had been a water leak from the roof in the past, and they just replaced two square patches of wall, and left the rest. NOT A GOOD IDEA! It was nasty. It freaked me out. So that one bathroom wall had to be replaced at that time, but we couldn't do the bathroom then too, so we had some open holes where it just didn't go in right next to the old plaster and tile, and creatures from the crawl space would come up through the cracks to visit some times. Ick!

Then we finally got to do the bathroom, as the tile was done wrong, outdoor grout was used to do it (a.k.a. water would go right through it!), it was crooked, and it needed some serious help. Also the window was put in right where the water goes when the shower is on... not good! When that remodel was started, the entire outside wall had to be cut out as even the framing under that silly window was rotten. We have a funny picture of one of us (pretending to be) on the toilet waving out to the backyard through the huge five feet by eight feet hole.  :)

So, all that's left now is the living room. With all of my health problems, and because of mold issues we've had in the coat closet in there, we figured there were some problems with moisture, and really looked forward to getting that room's icky old plaster torn out, getting the walls insulated, and finally finishing this little house.

Because of all the health issues lately, a few incredible friends of ours teamed up and went in today to start the job, including bringing in a mold inspector. Well, he found that the problem wasn't so minor as a little musty closet. The report? There is mold growing on all of our floor joists under the house. Black mold. For someone with a compromised liver, this is lethal within a very short time once exposed. We cannot live in our home until the floor joists are replaced under the house. This job will cost $20,000 to $25,000.

Wow.

Wow.

Yeah.

This is where our incredible friends come back into the picture. They started a fund for us the other day, with the plan to raise enough money to make our house safe for us, and to cover the medical bills that have piled up this past year of craziness. The timing of all of this is nothing short of God-ordered. I look back at all we've been through, and know that if it weren't for the crazy things we've already walked through with this house, and my health, we'd be steam-rolled by this. It is insane, to be told in a matter of hours that you cannot go home because it will kill you. We are nomads. Houseless! Don't get me wrong, I'm emotionally EXHAUSTED just experiencing the magnitude of it all. This crew of faithful friends and neighbors were at our house for ten hours today, packing up our belongings into boxes, getting them to safe places, setting it up for this work to be done. Believing that the work will get done, that God will provide, and we'll be able to get back in our home, and finally, live there being healthy and safe and comfortable.

I know that it will work out. God will provide. When things can't get much worse, and He comes through for you, and this same process happens over and over, and over again, you develop this roll-with-the-punches kind of ability that (especially if you're like me - everything in it's place, a place to call home, home is where you ground yourself) you just have to laugh! God always always always has our best in mind, and when you trust Him, you get to experience the most amazing God-events and acts of humanity and miracles and coming-through-in-the-clutch moments... God is amazing, you guys!
I am grateful to be experiencing the calmest peace right now, knowing that as long as I have Him, and I get to be near my treasures, my dearest loved ones, that is all I need, and the rest is just extra blessing! And for that I say, we may be house-less, but we are not home-less. After all, this world is just our temporary home. There is always something more to learn, more character to develop, more JOY to CHOOSE! Okay, God, I'm game. Keep growing me. I trust You. You will never fail.

P.S. I may be rolling with the punches now but... check back with me in a few weeks. Haha! (I'm just human.) I hope we can be home in time for Christmas. :)

Oh! and the link to the fund is: www.gofundme.com/OperationAgnew

Little house, see you in a while!

Liver biopsy

On Wednesday I had a transjugular liver biopsy. My liver function tests have continued to stay elevated and so we need to get some information. It was done in Interventional Radiology, with sedation, and they put a plastic catheter down my jugular vein through my neck, and took measurements of the pressures inside my liver and portal vein. I have never had this kind of biopsy before, all the rest have been through the abdomen. It wasn't bad, and I was sedated. But I remember saying, "ouch ouch ouch!" when they removed the plastic catheter and were inserting the metal cannula (which has a hook on the end, the doctor told me- glad I didn't see that!) And vaguely remember them saying they were giving me more medicine. They use the metal hook to take a few biopsy tissue samples of the liver. Before the procedure, the doctor explained that there was a chance because I am post liver transplant with different vein "hook ups" than most people, that they couldn't get the samples without going through my abdomen. But it worked, PTL!!

I was super groggy for a long time after in recovery, and they told me they gave IV Benadryl to help me through the biopsy part- that explained it; that stuff knocks me out!

The doctor told us that the pressure measurements look good, yeah! It will be probably middle of next week before we hear on the biopsies. Just continuing to believe that God is healing me, no cirrhosis, no PSC, in Jesus' name!

I am thankful for great doctors, a beautiful new hospital facility I got the best of the best technology for my procedure, and great staff that always welcomes my little one there with us. Here we are just after I got moved to my bed on the recovery floor. She said, "me, mommy's bed!" So that's what she got :) 

I love my sweet girl of courage!

Seeing and Celebrating

I am a firm believer in the promise that God will replace or restore what has been lost. Time. Strength. Love. Relationships. Purpose. Family. Friends. Joy.
I love the Scripture, "I will restore or replace for you the years that the locust has eaten." (Joel 2:25)
A close second, "what the enemy intended for harm, God has meant for my good." (Genesis 50:20)

At the moment I'm sitting here drinking iced coffee, watching a little HGTV and skimming Martha Stewart Living mag on my lap (the June issue, because I'm that behind, haha), and listening to my girl chatter away to her dollies through the baby monitor. Rare Momma recharge moment, and I love all of it- including and especially the full day we've had leading up to this little respite. Because it's still new to me after months and months of being too weak or sick to do this? Probably! But mostly because, for weeks now, I'm overwhelmed with the fact that that it's such a gift to have work to do, and strength to do it.
You don't realize how sick you were until you finally catch up from nine months of survival mode and realize: "I'm not a terrible cleaner, or home owner, or pack rat- I was just conserving energy that I needed to fight and survive!" :)
Grace for the self: so important.

Victory turns two on Friday. TWO! Where does the time go? Well, I know where most of this year went. Since last October (ten months ago) I've been in some crazy health circumstances. Thankfully, miraculously, wonderfully, the ITP crisis has been quiet - in remission as the doctors would say- hopefully completely Healed, I say- for weeks!
Now (because if it's too quiet, we'd be bored?) I'm facing a different kind of health issue. Urgent, but not critical. My liver enzymes have been elevated for weeks, and there's talk of rejection, biopsy, ruling things out, confirming other things... a bit frustrating in how cryptic and unavailable the Drs have been, and I haven't been able to speak with my actual hepatologist in weeks. August = vacay month it seems :)
I should be hearing the plan by tomorrow though, and it will be good to know what it is.

Despite this new challenge, I am overwhelmed with satisfaction at how well our little family not only survived the past ten months, but we thrived. And we are determined to keep thriving, no matter what we face in the weeks and years ahead.

Victory is turning two on Friday and I don't feel like I've missed one thing. God is so good. And my little girl is such a blessing. Earlier today she climbed up on a kitchen stool, turned on the faucet, and started rinsing dishes. I asked, "do you want to hand me those, you rinse and I'll load the dishwasher?" An emphatic, "Yeah!" was her response, and together we loaded the dishwasher. Pretty soon the sink was empty. This is her norm. Watching us do things around the house, and wanting to join in or take over and help. The joy she brings to our family is immeasurable.
My 23 month old is speaking in short sentences already. She jumps and dances and laughs, and has an incredible sense of humor. She sings. She lifts her hands sometimes during worship when we livestream church.
She is brilliant, watching something once and imitating it immediately, or days later, with attention to detail, and determination.
By the way... This is not a mommy brag post. This is not meant to make you think I have it all together. Oh boy am I still a work in progress. This is a brag post I intend to be pointing up to my amazing God. Every good thing, every gift, I just smile and look up...

I just marvel at how so many blessings can be wrapped up in one tiny person.

However: do not be mistaken. My girl is of course about to turn two, and showing all those parent-character-testing qualities as well.
[In fact I had to remind my girl at least three times while working on this post, that this is indeed naptime... she finally fell asleep... and now a quick twenty minutes later she's up. Win some, lose some :) ]

I look for the teachable moments- for her and for me- and smile at the end of each day. What a gift it is to be a mom. Especially after losing a baby four years ago, and when this little one was just two months old, being told the liver disease that ruined my first liver has returned. And this year of absolute craziness where in June my Hubs - the always believing for healing, never expressing worry, rock of our home- said (after I was out of the CCU and home from the hospital) he thought he was going to lose me.

Recently, many of my friends and acquaintances have been either announcing first pregnancies, or a second or third little one on the way. It can be easy to get sucked into a poor me, no fair mindset. We could not even think about trying to get pregnant again this year, as the implications of a pregnancy combined with ITP could have been devastating for me and a baby. We have to do such a balancing act of faith vs practical. Especially because I'm a big faith, "but God!" person.

I may never be able to get pregnant again. Or possibly, I shouldn't ever get pregnant again. If my liver doesn't shape up, the doctors will start telling me things like it is unwise and dangerous to be pregnant.
Where some couples only need to decide how many children they would like to have and how to space apart the pregnancies, we have to talk about things like, "is my body even capable of carrying another pregnancy? What if the ITP returned? Will colitis flare again like last time? What's my liver going to do? How will these meds affect the baby?" And that horrible question I learned to stop asking some time ago, but I'm sure some of you wonder if we do, "What if a baby survived but not me?"

I'm not trying to be a downer. I am normally pretty positive here [she chooses joy isn't just a title, it's my life!], and truly that is how my thoughts are most of the time. I've done quite a bit of work on my thought life the past four years. Today I just wanted to shine a little light on my very real world, not all rainbows and cotton candy clouds, and show you (though I'm not sure I'm doing a good job sticking to the point Lol!) that even with seemingly unfair or frightening circumstances, you really can thrive! I hope I am sharing how it is possible to walk through life with serious circumstances, and at the same time have complete faith in a God that does the impossible every day.

Victory is a double blessing of a baby in one little girl, and not a day goes by that I don't see that and thank God for that.

Zechariah 9:12 in The Message says, "This very day I'm declaring a double bonus- everything you lost returned twice-over!"

My heart rests because, while I dream of having a bigger family one day and I believe God can and will heal me, and may make that dream happen, my heart is full being a mother to my one wonderful Victory.

What if God has already fulfilled a promise to you, and you just haven't noticed it yet? You looked, but didnt see?

We need to look for and see the good in what we have, before jumping on a train of thought comparing our life to another's, or whining at how unfair we think life is. If I spent all my time only wishing I could be pregnant again, or have more babies, or that we had the resources to adopt instead of paying medical bills, I would be robbing myself and my family of being fully aware and grateful for all I have in the present.
I missed a lot of days and nights with my girl this year, in the hospital, the infusion center, the clinic, my bed. I had to trust that she was going to be just fine, and so was I. I had no choice on my physical location, and the way I saw it, no choice in my thoughts either. I had to fight to trust!

And here we are.
Celebrating TWO, celebrating my platelets recovering, celebrating our faithful God!
Instead of looking at what I miss, I choose to see the restoration, the full replacement and overflowing beyond, of what was lost.
And celebrate, celebrate, celebrate,
rejoice, and thank God!  :)