more joy

sara and elizabeth joy came for lunch at granma and grandpa peterson's, and we were invited! ejoy wasn't feeling too well (it was right before she returned to the hospital), but she was as delightful as her pictures say she is. and it was so wonderful to, in the midst of a hectic day, eat a meal with loving family.

thoughts on contentment

interestingly, this theme of contentment is very greatly connected to my recent thoughts on what it means that God is good, and i don't think it's an accident that these thoughts have presented themselves at the time they have. nor do i think it's an accident that i have been reading jeremiah burroughs. i have so much appreciated what he has to say about the subject that i cannot but think that, if only for a split second, God has used him to help me see right-side-up. they echo much of what we have heard douglas wilson teach us over our four years with him, and encourage a wise, heart-knowledge of it. here are a few of mr. burroughs thoughts that have captured mine:

A quiet, gracious frame of spirit is not opposed to a due sense of affliction. God gives His people leave to be sensible of what they suffer. Christ does not say, "Do not count as a cross what is a cross"; He says "Take up your cross daily."...So this inward quietness is not in opposition to a sense of afflictions, for, indeed, there would be no true contentment if you were not apprehensive and sensible of your afflictions.

A quiet, gracious frame of spirit is not opposed to making in an orderly manner our moan and complaint to God, and to our friends. Though a Christian ought to be quiet under God's correcting hand, he may without any breach of Christian contentment complain to God. As one of the ancients says, "Though not with a tumultuous clamour and shrieking out in a confused passion, yet in a quiet, still, submissive way he may unbosom his heart to God. Likewise he may communicate his sad condition to his Christian friends, showing them how God has dealt with him, and how heavy the affliction is upon him, that they may speak a word in season to his weary soul.

Not only in good things does the Christian have the dew of God's blessing, and find them very sweet to him, but in all the afflictions, all the evils that befall him, he can see love, and can enjoy the sweetness of love in his afflictions as well as in his mercies. The truth is that the afflictions of God's people come from the same eternal love that Jesus Christ came from...All God's strokes are strokes of love and mercy, all God's ways are mercy and truth, to those that fear Him and love Him (Ps 25:10). The ways of God, the ways of affliction, as well as the ways of prosperity, are mercy and love to him. Grace gives a man an eye, a piercing eye to pierce into the councels of God, those eternal counsels of God for good to him, even in his afflictions; he can see the love of God in every affliction as well as in prosperity. Now this is a mystery to a carnal heart. They can see no such thing; perhaps they think God loves them when He prospers them and makes them rich, but they think God loves them not when He afflicts them. That is a mystery, but grace instructs men in that mystery, grace enables men to see love in the very frown of God's face, and so comes to receive contentment.

A Christian comes to contentment not by making up the wants of his circumstances, but by the performance of the work of his circumstances. This is the way of contentment. These are the circumstances that I am in, with many wants: I want this and the other comfort - well, how shall I come to be satisfied and content? A carnal heart thinks, I must have my wants made up or else it is impossible that I should be content. But a gracious heart says, "What is the duty of the circumstances God has put me into? Indeed, my circumstances have changed, I was not long since in a prosperous state, but God has changed my circumstances. The Lord has called me no more Naomi, but Marah. Now what am I to do? What can I think now are those duties that God requires of me in the circumstances that He has now put me into? Le me exert my strength to perform the duties of my present circumstances. You should labor to bring your heart to quiet and contentment by setting your soul to work in the duties of your present condition. So it is with many who think, "If I were in such circumstances, then I should have contentment"; and perhaps they get into those circumstances, and they are as far from contentment as before. But then they think that if they were in other circumstances, they would be conteneted, but when they have got into those circumstances, they are still as far from contentment as before. No, no, let me consider what is the duty of my present circumstances, and content my heart with this, and say, "Well, though I am in a low position, yet I am serving the counsels of God in those circumstances where I am; it is the counsel of God that has brought me into these circumstances that I am in, and I desire to serve the counsel of God in these circumstances.

what more can be said? these thoughts come from jeremiah burroughs' The Rare Jewel of Christian Contentment.

because we want one...

:)

the fruit of the Spirit is...joy

this is a complicated update. there is a full explanation from matt and sara below. for those with less patience, just know that elizabeth joy is, after three and a half weeks in the hospital, finally at home...for the present...and God has been so merciful.

the decision was at first that a shunt was impossible, which left them with a liver transplant. this transplant needs to be postponed until she is bigger. but if it is postponed, she will NEED a shunt to prevent some other issues in the meantime. the shunt, however, also requires her to be bigger. so, she's home to grow. there was nothing more they dare do for her until then. the danger is too high, the procedure too dangerous. she is being closely watched. sara is trying to keep up with all ejoy's doctor's appointments throughout the week, while watching to make sure her weight gain is not the return of fluid in her abdomen.

matt's a doctor, and he has explained this medical phenomenon extremely well, much better than i could, so here are the accurate details from the dad:

"Elizabeth turned 10 months today! We were reminded today that the vast majority of babies conceived with Turner's do NOT survive to birth (either due to in utero death or their parents' choice to terminate). So despite all of her medical problems and the what they mean for the future, we consider ourselves blessed just to have her smiling face around and her cheeks to kiss. The upper endoscopy shows that Elizabeth has developed varicose veins all along the inside of her esophagus. These vessels are not supposed to be dilated as large as they are, resulting in a very thin, easily ruptured wall. If ruptured, the bleeding can be life threatening, and because of location, very difficult to stop quickly.

Elizabeth's veins looked on the verge of rupturing. Many are concerned that her varices (the dilated blood vessels in her esophagus and stomach) looked extremely "ready to bleed." If that were to happen at home, Elizabeth could theoretically lose enough blood to damage her brain or kidneys, even bleed to death, before anything could be done. Others feel like the risk is not that high and the bleeding rarely that severe. We are very torn. While we don't want to expose Elizabeth to any excess risk, staying in the hospital seems unbearable. Sara has been sleeping their with Elizabeth while I sleep at home. While the GI doctors could inject alcohol into each of the veins to help them clot and hopefully scar down, this requires frequent endoscopies (daily for a little while), each of which might require going on the ventilator. The only other treatment that would help prevent bleeding from these vessels is termed a "shunt." This consists of finding a way to divert the blood building up in the abdomen around the clot. This is where the MRI comes in. The best "shunt" surgery takes the open vein near the intestine and reattaches it to the open veins inside the liver. Today's MRI basically showed that there are NO portal veins in the liver to form that reattachment site. So we already know that Elizabeth will not be a candidate for the best surgery for her disease. A liver surgeon specialist will see her and then meet with us to talk about the other options. As best as our reading has informed us, the side-effects of the other procedures are quite problematic, ranging from retardation of growth, removal of the spleen, mental slowing, etc...

we met with the liver surgeon to begin discussing the next steps. While the vessels running into Elizabeth's liver are shot, the liver tissue itself looks pretty healthy. So the liver surgeon believes we should delay liver transplant as long as possible. But in order to do that, there are several issues that need to be dealt with now, including the risk of hemorrhage from her esophagus, malnourishment and ongoing abdominal fluid. He would like to perform a shunt surgery of some sort (to be determined during the operation depending on what they find when they go in). The only remaining decision is when. Elizabeth is much younger and smaller than the children who usually need this type of surgery. A shunt surgery on someone weighing only 15 lbs is very rare. As a result, there is some debate about whether to try and postpone even the shunt surgery until Elizabeth is bigger. Proceeding now makes the surgery much more complicated due to her size. Waiting until later increases her risk of bleeding, problems with abdominal fluid and malnourishment. We need real wisdom on how to proceed."

a few days before they brought elizabeth home, matt wrote the following:

"The wisdom we have been asking God for has begun to emerge in the form of consensus amongst our doctors and through peace in our hearts. First, Elizabeth's liver biopsy shows that there is no damage yet, meaning she will not need a liver transplant anytime soon! We are very happy about this fact, especially since I was her most likely liver donor (I'd be thrilled to give it to her, but just as happy to hold on to it)! Everyone agrees that the next step is a shunt surgery (which kind will only be decided once they open her up and take a look around in great detail). And everyone agrees that NOW is NOT the time to do that surgery. She is too small and still recovering from her severe infection. They would like to see her gaining good weight and growing prior to doing the surgery, and are keeping us in the hospital for several more days to optimize her feeding formulas and schedule. In other words, it looks like Elizabeth will get to come home before returning for surgery! We are both excited and nervous about this prospect. Excited...because we're sick of the hospital. Nervous...because Elizabeth's varicose veins will be untreated and could rupture at any moment! The bleeding could be rapid and severe, and in a worst-case scenario, could be life-threatening despite how close we live to the hospital. If she did bleed, this would prompt them to move the surgery timetable up (something which we are NOT hoping for). Oddly, Sara and I are feeling quite peaceful about this plan. We thought we'd be freaking out about the possibility of Elizabeth bleeding. But we aren't. We feel like the risk of this is small enough and that God will either spare us this event or give us the grace we need to deal with it if it occurs.

She's going home with the clot and the verices and the plan is to keep her stable by using diuretics to keep fluid off. She's taking her goal feeds so she SHOULD gain weight (Please Lord!) and they'll watch her closely to try to determine if the weight is "good" or not. She'll be getting food 24 hours a day, (the best way to help her gain) so leaving the house will be tricky :)"

if you're still reading this and would like to read more, here's a letter sara later wrote on a "good note," praising God for the ways in which elizabeth has progressed. it brings me to tears to know how truly good God is in the midst of such tormentous storm:

A line in the Lords Prayer allows us to ask God to give us "our daily bread." I've heard lots of sermons on this subject and have often asked for that very thing. I don't know that I have ever experienced it so profoundly as I am now. Coming home is wonderful. Soft sheets for sleeping, clean floors for walking & playing (despite what you might think, hospital floors are NOT clean), NO vital checks at 2 am, no lab draws, no nap interruptions. Home is good. But being home by myself is a little complicated, and has given me the chance to reflect on what turned out to be a truly blessed hospital experience. One in which we experienced daily provision - probably the answer to some of your prayers! While we're grateful to be discharged (no doubt our health insurance would offer a hearty "AMEN!" about now) I'm so thankful for so many things about the last few weeks (and no, I'm not on drugs, it really was this good):

- The MIRACLE of Matt's schedule. Had you asked us ahead of time, in which month of this coming year we would LEAST like to have Elizabeth hospitalized, we would have picked August (maybe tying it with September). Matt's rotation this month is notoriously insane, lots of patients, tons of work, tons of late nights...really bad. Well to reiterate what he's already told you, for the greater part of the month, he only had ONE patient...and near the end he got 1 or 2 more! That fact alone allowed him to be available (both physically and emotionally) at the drop of a hat to support Elizabeth and I, to talk with Dr.s and to walk WITH us through this hospitalization, all while still working full time, two floors above us. The miracle of this was driven home by the fact that all heck broke loose (translation: lots of admissions of complicated patients resulting in lots of work!) the same afternoon we were discharged! Matt's still at work as I type and we are in awe that God held back the chaos to protect our family. Praise God!

- A fantastic Clinical Fellow, who was attentive, communicative, compassionate, available and overall, our favorite person on Elizabeth's team. If your child has to have a complicated medical problem, and you have to live in the hospital, the staff can greatly impact your life. Dr. Pickens was a true blessing.

- Family available at the drop of a hat...My mom living with us for most of the hospitalization, Matt's parents up most days and any time we needed them, always bringing goodies to bless us.

- Elizabeth actually reached THREE developmental milestones while in the hospital! This is practically unheard of. It just doesn't happen...kids regress while in the hospital...and while she's physically weaker (back to back UTI, pneumonia, bacterial peritonitis and a portal vein thrombosis will do that to you!) her mind is sharp as a tack. She's waving hello and goodbye, she's giving high fives, she's making new vowel sounds and she's used the sign language sign for "more" appropriately! (though not consistently yet) :) I actually think all of the social stimulation of nurses and doctors and med students (need I go on?), not to mention friends and family, was GOOD for Elizabeth. So we are home, and the daily bread is continuing to arrive in the form of meals and care packages, phone calls and emails from friends which really encourage me, and I'm feeling a boost in that "can do" attitude I asked you to pray for. "

that is what we know at present. we don't know much on how this week has gone, but in this case no news is truly good news. thank you so much for any of you who are praying.

ejoy in her hospital crib

e joy and mommy sara

with daddy matt

finally going home