Welcome to A Million Miracles.

In February of 2008 I was diagnosed with an incurable, progressive and terminal condition called Idiopathic Primary Pulmonary Hypertension (PH). In retrospect, we can trace this illness back to at least January of 2004, but you can have it for several years before you notice any symptoms. My diagnosis came after I was hospitalized for what ended up being almost three weeks - spent consecutively in three different hospitals - two of them being in ICU units. Over the past year we have been sending email updates to family and friends concerning my medical/physical journey as well as lessons I'm learning as a result.

These are those emails. There's no rhyme or reason as to when I send out another email update. It just happens when "the Spirit moves." But whenever I write and send one, I will also post it on this blog.

Wednesday, February 18, 2009

#37 - A Celebration of LIFE!

Date Sent: Wed, Feb 18, 2009 at 11:57 AM

Aaron sent the following email to a select group of his co-workers this morning. I thought it was worth sharing.
~ Julia


If you are receiving this you are a part of a large network of people that were a part of our life one year ago today when we ( Julia and I ) were given grave news. ( whole story here ) You are also witnesses to so many miracles that we experienced. The doctors told us that they didn't expect Julia and our unborn child to live, and yet a year later they LIVE. This morning a year ago she was finally diagnosed. Tonight a year ago they transported her to UPMC to try to save both lives. Tonight at 2 am was when they intubated her since she was no longer able to breathe. And tomorrow at 10 am is when another of many miracles occurred, Harrison was born - alive. What we went through, most will never know, and I wish it to never happen to anyone I know. Throughout the last year Julia has slowly taken one new breath at a time, walking with oxygen / then without / then finally making it up a flight of steps / then being able to get out of the house / etc.. We are so grateful for all the support given, and the prayers said. Without it I truly do not think she would be here today. We still have struggles but we count them as blessings as it's far better then a life lost.

So today we celebrate LIFE, the life of Julia. and tomorrow the life of Harrison - what the doctors said didn't come true, instead they LIVE!!!

Take the time to call your family and say "I Love You." Take the time to give an additional hug to your friends. Look at each day as a gift, and each second as a opportunity to share your life.


Saturday, February 14, 2009

#36 - One More Breath

Date Sent: Sat, Feb 14, 2009 at 12:08 PM

Most of America is either celebrating (or avoiding) Valentine's Day today. We celebrated it yesterday, because today, February 14th, has different significance in our household. It was one year ago today that I was hospitalized. I can't really say that it was medically the beginning of our hard times, since I've had this condition for several years. So ... instead it was the climax (hopefully not the pseudo-climax!).

Even though being admitted to the hospital isn't ever a "good" thing, I was relieved that I was in a place where hopefully they could figure out what was wrong with me, and FIX it. But, instead, over the next couple days, bad turned to worse, and even worse, and ... well ... it turned into hell. God was with us through all of it, and in retrospect we are able to see His mighty hand of protection and provision. But there are so many memories that we just want to obliterate because they still hurt too much. Part of the grief cycle is that anniversary dates are hard - lots of memories come flooding back - and the first anniversary is generally the most difficult. Well, we've started our (three week long) first anniversary. I'm totally expecting this to be an emotionally packed three weeks full of thoughts/comments like "today is the day I was intubated," "today is the day the nurse accidentally gave me too much of the iv medicine and I had to be sent back to the ICU," "today is the day Harrison was discharged and I wasn't."

Please join me in praying that we can continue to healthfully work through the emotions of last year as we live through the next three weeks. A girlfriend is going through a rough time right now, and when her struggles hit their climax, she had flashbacks to another traumatic experience in her past. I was talking with her yesterday, and she re-iterated the grave importance of working through this (and not just stuffing it and moving on) because life will always throw you a curve ball. Getting blind-sided unexpectedly is hard enough without being confronted by the unresolved past at the same time.

A couple nights ago the whole "anniversary" thing started to come to the surface, and Aaron and I talked and cried until the wee hours of the morning as we verbalized different memories we each had. I don't think enough time has gone by to distort those type of memories - a lot was written down as we went through the experience (thanks to my mom's insight). But we finally got up the courage to tell each other some of our thoughts at some of the really tough times - like as I was being put under so they could intibate me and I was looking at my husband standing in the doorway talking to the doctors (was it for the last time when I would be un-sedated enough to know what's going on before we were parted by death?). (By the way, that was the idea of the thought - the actual "words" are too private to share publically.)

During the next hours - after I was intubated, and before I was stabilized - I regained "consciousness" twice - both times I was suffocating. One time I motioned to the nurse(?) that she needed to squeeze the bag faster to get me more oxygen - and then I was immediately put under again. The other time was what purgatory (in Catholic theology) must be like - I was conscious of the fact I couldn't breathe (like a pillow was being held over my face), but had enough sedation that I couldn't open my eyes - or move anything. I can still hear the voices of people talking around me, while I was unable to let them know. Finally I willed (or God helped) one of my fingers to move a millimeter or so - and Aaron happened to be looking the right place at the right time and told the doctors I was coming out of the sedation. (Even now tears are streaming down my face as I remember.) During that dark hell I begged God for one more breath - and one more breath - and one more breath - even though the breaths weren't enough to satisfy my oxygen-starved body. It's been a long time since I've relived that nightmare at night while I slept. But last night I woke up in a panic because I dreamed it was happening again.

I know that this type of brutal re-visitation is expected around anniversary dates, and that helps somewhat. There are so many horrific memories that we have that we're trying to effectively work through. Please pray for both of us especially diligently over the next couple weeks as we relive so much. ......I've just re-read what I've typed and wondered if it's too personal a memory to share this openly and in this type of forum. I don't plan to load on you all of the hard times, because there were thousands more good times since then. But maybe me "speaking the memory" so to say, will help make it a bit less painful.

This past year has been a continual series of "one more breath" thoughts and experiences. Some breaths come easier than others, and these days they come more easily for me than they did two years ago (a full year before I was diagnosed). Praise God for how far He's brought me! But life itself is a series of taking one more breath. And the distance any of us have from death is just that - the time will come when we don't have that next breath. It may be "expected" because you're sick - but for the majority of us, it will be "unexpected" - a heart attack, a car accident, a plane falling from the sky and hitting your house while you sleep. Part of the human condition is the fact that we all die. If we accept Jesus Christ as our personal Lord and Savior, then we're promised an eternity in heaven. Christian theology describes hell as a lake of eternal fire. My personal hell (or the closest I hope to ever come to it) is being quasi-sedated and suffocating, and not being able to let anyone know I'm cognizant of it.

But none of us are promised one more breath. Having a terminal lung condition, and fighting to breathe has taught me to appreciate each and every breath (literally - not just figuratively!) that God gives me. What are you doing with your breaths? Are you wasting them just trying to "survive" life and find "happiness"? Or are you making them count and using them for the glory of the one who created you? (Don't give me that evolution excuse - even Darwin himself concluded it wasn't even possible before he died - people just keep clinging to it because it's the only other "possibility" if you take God out of the equation!) I've learned the tough lesson that this breath (the one you and I each just took) might be the last. If it is, then what comes next? ....... Don't waste this next breath.

~ Julia

p.s. I've included a photo taken of me last year in Pittsburgh - it was the first time I sat in a chair after being bed-bound for almost 2 weeks.

Sunday, February 1, 2009

#35 - Manna

Date Sent: Tue, Jan 27, 2009 at 11:20 PM

So, you know the story. Moses led the Hebrew slaves out of Egypt. God miraculously parted the Red Sea so they could escape the Egyptian armies that fickle Pharaoh sent after them. Then after the Hebrew masses passed through on dry ground, the waters "un-parted" and destroyed their enemies (aka the enemies of God). The wavering Hebrews kept complaining about everything, but their patient and loving God still kept meeting ALL their needs. But rather than focusing on God's continual miraculous provision, they still found more and more things to complain about. God took care of EVERYTHING - their clothes and shoes didn't wear out even after wearing them for decades while wandering around the dessert. God even provided water, and supernatural food for them to eat - MANNA.

Do you remember manna? It showed up each and every morning (except the Sabbath) on the ground for them to just pick up and eat. But ... if the people didn't trust in God's continued provision, and stored it for the next day, it turned rancid. This daily provision of their every need continued without fail for decades! (Note: once they reached the Promised Land the manna stopped and they had to start tilling the dirt and raising their own crops. The Promised Land, though "perfect" still required work from its inhabitants!) Even though they had a daily reminder that God hadn't forgotten them, they still complained: they got bored with His provision and begged Him for something else.

So now that you remember the back story, do you remember what Jesus said to Satan when he was tempted in the dessert - "It is written: 'Man does not live on bread alone, but on every word that comes from the mouth of God.' " (Matthew 4:4, and again in Luke 4:4). So, where in the Old Testament (aka The Torah), was that written? Deuteronomy 8:3: "He humbled you and let you be hungry, and fed you with manna which you did not know, nor did your fathers know, that He might make you understand that man does not live by bread alone, but man lives by everything that proceeds out of the mouth of the LORD." Note here that God didn't feed them merely to satisfy their physical need: He fed them to teach them a greater spiritual truth.

I was sitting in Bible Study the other week, and Deuteronomy 8:3 was nonchalantly read, then the teacher moved on with that night's topic. But I was stuck reading and rereading that verse. As I did, how I read it changed each time. "God humbled ME... and ALLOWED ME not to be able to breathe ... and breathed for me in a way that I did not know ... He met my needs in a way I had never experienced, nor did my parents who are (were) strong Christians experience that SAME KIND of interdependence on God ... that He might make me understand that I'm not alive because I can breathe, but that it's His breath that gives me life."

It started with God humbling me - with Him taking me to a place where I couldn't keep going on my own strength. In my situation it was that I couldn't breathe anymore (and machines had to do it for me). It doesn't say that God caused the situation, and it doesn't say that Satan caused my problems (as was the case for Job), and it doesn't say that it was my own poor decisions that caused it. What caused my problem isn't what matters here. But it says He "LET YOU BE hungry" - He allowed it. That also implies that He knew about it: I wasn't alone going through the experience.

But it doesn't end there. God didn't let me (or the Hebrews) stay in that needy situation. He fed them - He gave me breath, and He did it in a new way. God is too big to be put in a box, it's presumptuous for us to expect Him to work in our lives the same way he worked in someone else's (a friend or someone in the Bible). The Hebrews were given manna to satisfy their hunger. I was intubated (which is very unpleasant, but itself isn't "miraculous"), but my "suffocating/stagnated" walk with Him was revived. But the verse goes on. There's a purpose for all of this. They were taught that "man lives by everything that proceeds out of the mouth of the Lord." I got to experience the breath of heaven - His living breath - my spirit was revived.

But I said that each time I re-read the passage the words changed (though not the meaning or significance). The Hebrews were hungry and were fed. I couldn't breathe, and experienced God's breath of life in a new way. But what is God wanting to teach you? Why is He humbling you (or has recently, or will in the near future)? Is He letting you know fear so you can experience His peace that passes all understanding (Philippians 4:7)? Is He letting you feel oppressed (spiritual, physical, or relational) so that you can experience the freedom that only He can give? Is He allowing you to doubt so that you can grow in your faith that "God will meet all your needs according to his glorious riches in Christ Jesus" (Philippians 4:19)?

What caused your troubles (God, Satan, someone else, or even yourself) isn't necessarily what matters. He knows about your troubles. He wants you to be humbled (in response to His omnipotence/omniscience). He wants to meet your needs. But He won't stop there. He wants you to learn something about HIM as a result. Are you (and I) going to be grateful for the MANNA that God WILL provide for you in whatever you're going through right now, or will you be like the Hebrews and be insatiable and just complain?

~ Julia

#34 - Weight Woes

Date Sent: Sat, Jan 17, 2009 at 9:16 AM

At 32 weeks pregnant I had only gained 5 pounds, between week 32 and 33 (when I was hospitalized), I had gained an additional 7 pounds (of swelling)! During the several days in the hospital before Harrison was born, I gained LOTS more water weight (because I was in right-side heart failure). At 34 weeks Harrison was born - and he weighed 5 pounds even. So, in essence (if you take into consideration the extra blood flow, placenta, amniotic fluid, etc.) I had LOST weight while I was pregnant. A week in the hospital of eating NOTHING, and two weeks of barely eating anything resulted in me being 20 pounds lighter when I was discharged than before I got pregnant. That wasn't the ideal way to loose weight, but I was SO EXCITED to look down at my legs or at my face and see them thinner! In the eleven months since I was discharged, I have gained the entire 20 pounds back. I know that sounds like so much weight to put on so quickly, but when you consider the fact that the only "exercise" I got was walking up the steps in my house a couple times a day.... I just hadn't cut back my food intake enough to match my lack of physical activity.

Most winters (Feb/March), Aaron joins his family to go skiing in Utah for a week. This year he's taking Alex with him, while I stay home with Harrison. I can't handle the elevation of Park City (7000 feet on Main Street). Actually, looking back, that's how we know that I've had PH for at least 5 years, because 6 years ago when I accompanied his family I did just fine. But 5 years ago when I went I struggled, and 3 years ago I had horrible altitude sickness the whole week - I could barely walk around the hotel room! So, anyway, Aaron's decided to get his "skiing muscles" ready for the trip (since this past year he's focused on me rather than exercise). So, last week he started on the treadmill (walking backwards uphill on it does wonders for those muscles!). I decided to start too.

One of the updates I sent last week talked about my experience last Friday, when I finally "got back in the saddle again." I ended up going about 10 minutes at a speed of 1.3 mph (which is quite slow). Well, every day since then I've gotten on again, and as I get stronger I've been going slightly faster, and slightly longer. Yesterday I went 20 minutes at 2.2 mph (with oxygen on) - and I wasn't tired or winded afterward! That meant that I ended up walking .75 miles. That's still not far, but a HUGE improvement from a year ago!! Sometimes when people increase their energy output they also increase their food consumption. This past week I've been careful that I didn't do that. I felt GREAT! So much more energy!

Then yesterday came ... and it hit me ... I felt HORRIBLE! It felt like I had "increased" the strength of the iv meds. I was having all the side effects again - I was exhausted, my bones hurt, had a headache that wouldn't go away, I was nauseous.... So, I got on the scale... As of this morning, I've lost 4.5 pounds in one week. IMPRESSIVE, eh? I guess it was too much too fast. My body is getting slightly more medicine since I have slightly less body mass. It's been so long since I've gone through an increase, that I forgot how unpleasant they were. I never thought I'd lose THAT much THAT fast. Oops! I guess I have to slow down. When people lose weight, they want it to come off as quickly as possible. Apparently I can't do that. Sometimes it feels like I just can't win. Hopefully if I can wait a few days for these side effects to wear off, I can get started again. Guess it'll be a longer process than I hoped to lose the 20 pounds again. Hopefully I'll be able to tolerate that much extra medicine. Otherwise I'll have to have a chat or two with the doctor about what to do.

This morning when I woke up I felt better - though not quite myself. The first 24 hours after an increase were always the most difficult - guess I'm beyond that now. I think I'll take today easy, and then start again tomorrow - more slowly.

~ Julia

#33 - Hope for the Hopeless

Date Sent: Fri, Jan 9, 2009 at 1:22 PM

In November I finally started a blog about our family's adventure. Feel free to check it out at http://feitnerfamily.blogspot.com/. I've gotten such overwhelming feedback (from others who are hurting) about the post I wrote this past Wednesday, that I decided to share it with you also. Maybe you'll find something speaks to you - maybe not. But either way, here it is.

~ Julia

Hope for the Hopeless

A song keeps playing in my mind over the past week or two (the words and music are by Don Moen). It's a song I've known for years, but never really took to heart. It started when I was praying for a friend who's going through a rough time. I kept praying for her intermittently for the better part of the morning, and each time I did, the song popped in my head again. (When I wasn't praying for her the song I heard was Pink's "So What" - not Christian in the least, but I heard it on the radio as I was flipping stations, and it stayed with me all day.) Since it (the nice song) kept popping into my head every time I started praying for her again, I figured it was meant for her. So I emailed her the lyrics.

But since then, the same song keeps coming to mind when I'm praying for other friends too. At first I thought it was just because I was associating it with hurting friends. I no longer think so. We all have pain in our lives - either currently, or previously, or in the near future. As Christians we can cling to the promise "...that IN all things God works for the good of those who love him, who have been called according to his purpose" (Romans 8:28). Even our insufficiency, our brokenness, our pain, our mistakes (even the BIG ones) - God will somehow use for GOOD in our life. But this is only a promise for those who who are trying to follow His will (or who had been once, and then truly become repentant).

I've had some rough days (emotionally) over the past year. When I was first hospitalized last February, I was relieved that someone was going to find out what was wrong with me and be able to fix it. But when the doctor came in and told me that he didn't think I'd live to see my son born (I was 33 weeks pregnant), my world came crashing down around me. But God brought me through. There is no earthly fix for what I have - except an eventual double lung transplant, and I'd only have a 35% chance of still being alive 5 years after the transplant. But just before that doctor "told me like it is," God, in His generosity and love verbally spoke to me and told me that "it will be okay. This will end." Since then He's confirmed over and over again that it WAS His voice I heard. I don't know how long I will be struggling with this terminal illness before he chooses to miraculously heal me, or what hard times I'll have to go through in the meantime. Nevertheless, I clung to those words through through the weeks of agony in the hospital - during the times when I literally was fighting for each and every breath - and during the months since while I'm struggling to regain a "normal" life - for me and for my family.

In Isaiah 46:4, it says "... I am He who will sustain you. I have made you and I will carry you...." How reassuring to know that St. Augustine's "Ultimate Being," the Creator of the entire universe wants to and will sustain ME. He will CARRY me when I don't have the strength to take one more step, or even to stand. It is when I fall to my knees (in prayer, humbleness, submission, exhaustion, etc.) that He will gently pick me up. It doesn't say He will "hold me," it says "carry me" - He won't let me stay where I am, in my "dark place" (as a hurting friend recently so eloquently phrased it). He will move me to a place of safety, a place of comfort, a place of growth and even love and forgiveness.

God will make a way
Where there seems to be no way
He works in ways we cannot see
He will make a way for me
He will be my guide
Hold me closely to His side
With love and strength for each new day
He will make a way He will make a way

By a roadway in the wilderness
He'll lead me
And rivers in the desert will I see
Heaven and earth will fade
But His word will still remain
He will do something new today

God will make a way
Where there seems to be no way
He works in ways we cannot see
He will make a way for me
He will be my guide
Hold me closely to His side
With love and strength for each new day
He will make a way He will make a way

#32 - Back in the Saddle Again

Date Sent: Fri, Jan 9, 2009 at 1:17 PM

It's been just over a month since my last email update. The Christmas season was wonderfully busy in our house. We decorated on Black Friday, and took down the decorations just before New Year's. I would have loved to keep them up longer because I absolutely live for Christmas, but the tree was starting to shed needles (it was a fir, so it held up very well considering), and we wanted it out for trash day before Aaron had to return to work.

In the beginning of December I started a new pill called Tracleer, that's supposed to help with my PH. You take a 1/2 dose for a month, and then as long as you're doing okay on it, you start the full dose. My first full dose pill will be this evening. Hopefully I'll respond well to the increase. Just before I started this pill I was getting out of breath walking up a flight of steps again, and a week after starting I walked about 1/4 mile and did okay. So, it seems to be helping a lot! I'm hoping that the full dose will make my life even better! There are side effects, though. Mostly so far it's just heat flashes (I now have so much more empathy for women going through menopause!). But it can also cause some pretty serious liver damage, so I have to get my blood checked once a month to make sure my liver's doing okay. But if this pill is what God wants me to take, then He'll protect my liver.

In the end of December (a full year ago) or beginning of last January I wanted so desperately to get "back into shape." So, I got on our treadmill to do a little exercise. Those 60 seconds were probably the most discouraging ones I had had up to that point. I was walking on the slowest possible setting, and still didn't last even a full minute. You can only imagine the horrible things I told myself when I had to stop and sit down so I wouldn't pass out. This was probably a month or so before I was hospitalized and diagnosed with PH. Well, it's been a year since that moment of defeat, and whenever I am in our bedroom I still try to avoid even glancing at the treadmill because those horrible feelings come flooding back so easily.

Well, this morning the boys woke up early, so I decided it was time to get back in the saddle again. So, I put on the oxygen and the pulse-ox on my finger (to check my pulse and the oxygen saturation of my blood) and started. Before I even turned it on my heart was racing - I was so scared that I'd feel that same kind of defeat again. I shouldn't have, because I can now do grocery shopping with both kiddos. But the last time was so traumatizing that I was really nervous. I ended up only walking about 10 minutes, and at a speed of 1.3 (which wasn't quite the slowest possible). But I wanted success more than "impressive" numbers. AND I DID IT! My oxygen sats even stayed in the mid 90s! Next time I'll try going longer or without oxygen and see how I do. But it's the first time back that's the hardest.

Now that it's almost one year since I was hospitalized, Aaron and I keep reliving some of our experiences, and reprocessing everything. I guess it's part of the normal grief cycle. We can see how far God's brought us, and are awestruck! My energy level is better than it was TWO years ago at this time. (I know that because two years ago we were house hunting and packing, so I remember how tired I was during that process.) I'm not where I want to be, but Praise God I'm not where I have been. I keep moving i the "right" direction!


~ Julia

#31 - One-two punch

Date Sent: Fri, Dec 5, 2008 at 12:36 PM

My last email briefly mentioned the recent prayer time that was had around me (and others) at church, and how I've been breathing easier since then. Praise God! Well, at one point during the prayer I started to get really bad pains in my legs. One of the "mature" men-of-God who was praying explained that it was Satan trying to distract me from the real issue. So, they prayed about the pains and they left. I mentioned to him that I get those type of spiritual attacks frequently. Satan knows that right now I'm struggling with my health, so he keeps sending me more physical attacks (as opposed to emotional/relational/etc.). When Jesus had been fasting for 40 days, Satan used the enticement of food to tempt Jesus into sinning (Matthew 4). But though Jesus was tempted, he didn't sin. Well, I've been dealing with physical/health problems for so long, that he knows that's probably a weak area for me. The past couple days Satan has stepped up the attacks.

Aaron's holding onto some "normalcy" in his life through his job. He can temporarily escape what's going on at home and go to work (though my health is always still in the back of his mind). He's gotten huge satisfaction in his job throughout the past year or two. Of course he has stressors also, but overall, he loves what he does. Well, the past month or so Satan's been tiring his hardest to discourage Aaron at work. It's been working. But hopefully now that we've finally realized it for what it is, we know better how to pray about the situation(s). Please join us in praying for God's will to be done and for peace for Aaron.

For the past three or four years I've struggled with migraines. They started after Alex was born, and the doctors can't figure out what causes them. But I've learned how to recognize them starting, pop a few pills right away, and then can cope because the pills take the edge off. They generally last an hour or hour and a half, and with the pills the migraine is quite uncomfortable, but bearable. This morning I woke up and within a minute or two felt one starting. So I immediately took the pills, and then expected to get on with my day. But today's migraine was different! It put me flat on my back. I couldn't open my eyes because it hurt too much. The pain kept getting worse and worse. For the first time in my life I was vomiting because of how much pain I was in. This morning it lasted three hours! At one point my mother called me from California (because the Holy Spirit told her she needed to call me right then). As soon as the ringing stopped, before I even heard her voice, I started crying, "Mommy, pray for me." She started to, and the pain lessened a bit. Aaron and I phoned several people to ask them to pray - but didn't reach any of them (Satan was trying to keep discouraging us!). Mother also started calling people to ask them to pray. She got through to some and left messages for others. As people kept praying, the pain diminished more and more. And within probably 30 minutes, it was totally gone. Praise God that through the power of prayer we can overcome! With every other migraine I've had, I've been physically tired for the rest of the day. But, I'm not tired at all. I'm geared up and ready to get stuff done. This wasn't a usual migraine - it was a spiritual attack. So, for those of you who got a call and prayed, thank you. For those of you who just felt impressed and prayed, thank you. For those of you who after reading this email, will pray, thank you!

I doubt this is the last attack Satan's going to throw my/our way. He doesn't give up - he doesn't really have anything else to spend his time doing. We both feel that there's going to be other physical attacks coming soon (someone else actually just phoned us and has the same feeling). So, please keep praying for us - that we'll stay safe, and be able to remain strong and keep praising God through all the punches Satan throws our way. But as for this morning's attack - I'm still standing, and still praising God.

~ Julia

#30 - Out of the mouth of babes

Date Sent: Thu, Dec 4, 2008 at 4:52 PM

On Tuesday morning earlier this week, I had a doctor's appointment in Pittsburgh. So, my mother-in-law kindly watched the boys while Aaron and I drove out and stayed over Monday night. I haven't been feeling the greatest again lately, so we were all curious to see what the doctor would say. Usually Aaron and I take the time to pray together before these appointments, but we didn't this time - we just forgot. We both realized it during the appointment, though. The news we got was mixed. I did a six-minute walk that morning for them, and I walked farther that I had the time before, which is good. He was pleased with the distance I covered. However, the oxygen levels in my blood dropped too low during it (to 87 - he wants it to stay above 90 or I'll need to start wearing oxygen during activity again). Since I was taken off Viagra (since my body could no longer tolerate it), he wants me to start a different pill called Tracleer. Hopefully this will keep my oxygen levels up. He said that if this doesn't work, then I'll have to go back in the hospital for several days and they'll switch me from Flolan to a different iv medicine. He said that maybe my body will respond better to that one (called Remodulin) and my breathing will get better that way. So, I'll start Tracleer as soon as the specialty pharmacy mails it to me. We'll see how that goes, and my next scheduled appointment is in six months. Though we didn't talk about it at the time, we both walked away from the visit quite discouraged. But we both felt that if that's the road God has for us, then so be it. Right after the appointment we had lunch with some of Aaron's colleagues who are in the Pittsburgh area, and then drove home.

On Wednesday night, a local pastor (who's recently written a book) came and gave his testimony of miraculous healing from Leukemia. So, I went to listen to it, and Aaron (who had to work late that day) came in near the end. As I listened to some of the struggles he and his wife went through, I sat there and cried. Our stories have many differences, but there's one key similarity. God gave both of us a promise that despite what the doctors were saying, we would live. He is now on the other side of his big miracle, and I'm still waiting for mine. It was really encouraging to listen to him share.

At the beginning of the evening there was a praise and worship time. During the first song I sat down (I was tired) and started to think. I was about to listen to a man talk about his miraculous healing. Maybe that will be me up there one day. Wouldn't that be awesome!?! But then I let discouraging thoughts come into my mind, and I had a talk with God. I told Him that maybe what He meant (when He told me "it will all end") was that something else will kill me before PH does - like getting hit by a bus or something. I said "if that's what you meant, then so be it." Immediately (within just a second or two) the song changed, and "How Great Is Our God" started. Do you remember me typing about that song before? God has used it to speak to me several times during these past several months. The chorus says that "and all will see, how great, how great is our God." As soon as I told God that I'm okay if He doesn't really want to heal me, He reminded me that HE PROMISED THAT HE WILL. I just need to wait longer.

At one point during the Pastor's six month hospital stay, just as he had finished his third round of chemo, his appendix ruptured. Because his white blood cells and platelets were so depleted they couldn't operate (he would have died on the table). So, they told him that he would live a maximum of 3-4 days. Six and a half weeks later his cell counts were finally high enough to operate. The doctor was shocked to find the ruptured appendix (and all the toxins that should have killed him long before) were encased in a pouch. He couldn't medically explain it. ... He didn't need to. That was just one of the countless miracles he experienced.

As we sat and listened to the pastor talk, Aaron and I began to feel some of our fear (from what the doctor said to us at the appointment) fall off our shoulders. We were reminded that it doesn't matter what the doctors say, or what the results of my tests are. All that matters is what The Great Physician says. We don't know what the next several months will look like, but we do know the end of the story. We need to stay focused on that rather than the hurdles.

After he finished his testimony, there was a prayer time. Everyone who needed a healing of any kind stood, and others surrounded them and prayed and prayed. During the prayer I felt an extreme heaviness in my chest, and then after the weight lifted I could breathe better. Today I feel so much better than I did yesterday morning. (This morning a woman even commented to me that I seem so much better than the last time she saw me!) I'm not completely healed - God told me that I won't be until something specific happens, and to my knowledge it hasn't yet. But something inside of me improved last night! Praise God for every turn in this road we're travelling!

During the service the boys were in their nursery, so they had no idea what the grown-ups were discussing at church. We finally left church last night (way past the boys' bed times!). Before I even pulled out of the parking lot, discouraging thoughts began to enter my mind again. Satan is relentless! And then, my Alex, all on his own began to sing a song that he must have heard somewhere. He sang the same lines as loudly as he could over and over the whole way home. They must be the only lines he knows to the song, but that's okay. God put it into my son's heart to sing the encouragement I needed. "My God is so great, so strong and so mighty - there's nothing my God cannot do - for YOU!"

~ Julia

#29 - Focusing on Bread

Date Sent: Sun, Nov 23, 2008 at 2:40 PM

As I type this email, we are in the car driving from North Carolina back home. Today is my 29th birthday, and my mother is watching our boys while Aaron and I spent a long weekend away, visiting the most beautiful house in America - the Biltmore! (www.biltmore.com) I've always been in love with architecture and beautiful landscaping, etc. So, when Aaron suggested that the two of us make the 16 hour round-trip drive to take a candlelight Christmas tour as my birthday gift, I was very excited! One thing we didn't think about was that Asheville, NC is almost 2000 ft. higher in elevation than where we live. The three things that make breathing harder for me are heat, humidity, and elevation. But, at least we brought my bottled oxygen with us. Aaron kept it in a backpack as we toured the magnificent grounds. I needed to sit, rest and use the oxygen quite frequently. But, it was well worth it to see the beautiful house decorated for Christmas!

The previous weekend was my first time going home to Wheeling, WV in over a year! I used to visit my mother there probably every 6-8 weeks - that is before my illness hit crisis mode last winter. My mother is the Missions Chair at her church, and last weekend was the 3rd or 4th Annual Missions Focus, so we thought it would be a good time to make the effort to go. By the end of the weekend I was exhausted and it took me a day or two to recuperate from the trip, but I'm so glad that we went! We stayed at a hotel rather than my mom's house so that I wouldn't have to do so many stairs, and it worked well. It was so encouraging to see people from the church family of my childhood, and to feel their continued support. There are so many people who still pray for us daily, and we are so grateful. It is in part because of their faithfulness that I'm doing so well. God is answering your (and our) prayers. I'm SO MUCH better than I was, but I still get tired very easily, and finally accept help to do things like cleaning my house so that I can focus my attention/energy on more important things like the boys.

Each year, the theme of the Missions Focus is taken from a line of the Lord's Prayer - last year was "Thy will be done." That seemed to be the theme of our life this past year. God took our family down a path that we definitely wouldn't have chosen. But last year we prayed as a couple for God's will to be done in our lives. If it hadn't been for God's grace, the hurdles we've crossed would have been insurmountable. But we both keep feeling blessed that God's giving us the strength for each new day and using our struggles to bring about good for His kingdom. This year's theme was "Give us this day our daily bread."

As we sat in the church service last Sunday at the Missions Focus, and listened to the sermon, once again Aaron and I heard God speaking to us. It feels like the focus for this coming year in our lives once again lines up with the Missions Focus theme. For the past several months we've both felt challenged by God to change how we handle our finances. When I was a child I would frequently pray for God to give me lots of money when I grew up. But, the cry of my heart is being modified. There is so much more that both of us want to do with the money that God has given to us (however much or little that is). This is part of what the sermon discussed. Here are some of the Pastor's thoughts that especially hit home for us:

We should join into a partnership with God to use what He's given us to help relieve the needs of others. After all, why should He give us more if we aren't using what He's given us already? Our prayer should be for God to meet our needs BUT ALSO to use US to meet the needs of others. We have a responsibility to share what we have (what God's given us) - spiritual, financial and physical. The same God who spoke creation into being wants to meet our needs too - that is our needs, not our greeds.

Later that afternoon, during the four hour drive home, Aaron and I discussed the weekend, the sermon, and what we feel God is asking of us. After praying about it, we've decided to make some more changes. I found it interesting that the following Tuesday morning ladies Bible study discussed a lot of the same things (though taken from the book of James instead of Matthew) - how to and how not to use your finances. It was like God was wanting to make sure that we got the point. We did. It could be tempting to wait until after the holidays are over to make these changes, but we're not. After all, delayed obedience is disobedience (anyone who's had children will attest to that!).

Well, Happy (early) Thanksgiving. We have so much to be grateful for this year! I hope you're grateful for the blessings in your life too - I'm sure there's more than you can count!

~ Julia

#28 - The Mountain Mover

Date Sent: Wed, Oct 15, 2008 at 3:49 PM

It was eight months ago yesterday that I was hospitalized. Eight months ago today that the doctors began to realize that what was "wrong" was much bigger than just a pregnancy complication. Eight months ago this coming Saturday that I was diagnosed with pulmonary hypertension and told I might not live to see our baby born. Eight months ago this coming Sunday that Harrison was born via an emergency c-section in an ICU room because they could no longer stabilize me. Eight months ago this coming Monday that I was started on Flolan - the iv drug that keeps me alive. And it was TODAY that my doctor in Pittsburgh phoned to tell me to DECREASE the strength of that same iv drug.

In my last email I admitted that I was struggling. I wasn't struggling to hope, I wasn't struggling to believe that God would keep His promise to heal me. I was struggling to make it through the day physically. I just didn't feel good, and didn't have the energy to do even some of the basics like take a shower. I sent that email out late on Wednesday night, and by Thursday morning my spirits felt lifted. All the prayers that were being lifted up on my behalf made the biggest difference (THANK YOU!) - but I was still tired. I waited almost a week for my sinus infection to start to get better, and then phoned the doctor's office yesterday to talk with them. The nurse (who I know, and is absolutely excellent!) said that she knows what she thinks, but will talk with him, and phone me "tomorrow" (today). I was so incredibly nervous to hear what he said - there were several possibilities of what he could say, and quite frankly, I wasn't 100% excited to hear any of them (even possible "good news" made me nervous).

Well, they returned my phone call a few minutes ago, and said that once again it sounds like too much medicine. They not only want me to stop doing any increases, they think I've passed the threshold and I have TOO MUCH! So, tonight before I go to bed I'm supposed to DECREASE (just a little!). I'm currently at 21 ng. I'm supposed to go back to 20 ng. (If you remember, when I left the hospital, I was at 11.5 ng). Over the phone she reminded me that the doctor wanted me to go to 30 ng, but apparently my body doesn't want that much. This is NOT a sign that the doctor doesn't know what he's doing, it's a reminder that God has different plans for me. I am not the average PH patient, it's a reminder to me of His promise that this will END. The doctor has NOT put me on a "decrease schedule." I'm supposed to go back to 20 and see what happens. Just before going up to 21, I had two REALLY GREAT weeks (energy, stamina, strength, emotions, etc.). I'm so happy to know that MAYBE that will be my experience a while longer. It may be God's plan for me to increase again down the road - I'll have to accept that if that time comes, but for TODAY ... this is the BEST news I've heard in a LONG time!

I am VERY nervous about the decrease, though. I have never done one, and don't know exactly what to expect. Every time I would increase I had a day or two of feeling "off." The doctor couldn't tell me if that will happen when I decrease too - he's never had anyone like me. **smile** I have a lot of things scheduled for the rest of this week and next. So, for right now, they're all being put on hold. If I show up, I show up - if I don't, I don't. If it takes my body a while to get used to this change, then so be it. I am just so INSANELY EXCITED that I'm going to DECREASE!

Do you remember the mustard seed necklace that I wear (mentioned it in an earlier email)? When I just looked in the mirror, I was reminded again that Jesus said, "I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you" (Matthew 17:20). Our prayers (yours and mine) ...our faith (yours and mine) in the promise God gave me just before I was told that I had a terminal illness - that this will END ... and the love and power of our amazing God ... ... ... ... IT'S MOVED A MOUNTAIN - my Everest! The mountain's still there, but MAYBE I've reached the summit. It's time to enjoy some beauty before I begin the arduous climb back down.

~ Julia

#27 - I'm Struggling

Date Sent: Wed, Oct 8, 2008 at 11:07 PM

So, I've been struggling this week. I considered sending out an email, but felt I didn't have anything positive or encouraging to say, so I didn't. I was talking with a friend tonight (who could tell just by looking at my face that it's a rough week) at Bible study, and she reminded me that these are the times that I should send out an email - and get extra prayers coming my direction. She said that it's "okay to admit that the girl who's struggling to live is struggling." So, here I am saying it for the whole world to hear - I'm struggling.

A couple weeks ago I felt horrible - absolutely horrible. I mentioned in a previous email how I cried out to two friends one night during Thursday night prayer at church. I was tired, I was worn, I was about to give up. I ended up seeing my doctor a few days later, and he took me off the Viagra. When those two ladies saw me the following Thursday, it was like I was a new person - full of life again, full of energy, full of smiles. I had been "healed" to the point that the Viagra wasn't helping me anymore, but the doctor still wanted me to continue to increase the dosage of the iv medication some more. This way they could see how much I can tolerate - how much is helpful, and when it is that I hit the point that it's too much. Well, I did another increase this past Friday night just before bed - it feels like I've passed that threshold, and it's now too much. Usually I'm feeling quasi-normal by Sunday evening. It's now Wednesday night, and I still don't feel quasi-normal yet. I don't know if the problem is that this last increase was one too many, or if the problem is that I have a cold (AGAIN!) and that's wrecking havoc on my body. All I know is that I don't feel good. I'm so scared that I'm going to get to the same point of desperation that I reached that Thursday evening. Now's not the time for the doctor to decide what to do, we need to wait for the cold to go away and see if that was the problem or not. I don't want to play this waiting game.

My sister had been visiting from California with her toddler for the past two weeks, but they flew home today. I was wondering how I was going to survive the rest of the week alone during the day with the kids while Aaron works, since lately she'd been doing more childcare than I was. But then a college friend phoned me up and asked if she could come stay for a few days to help me - so she's here now. It's such a relief to know that there's someone else in the house. I'm just absolutely exhausted. Yesterday I literally spent all day sitting - I moved from the couch to the stool in the kitchen, to the dining room chair, and back again. I didn't have the energy even to pick up my crying baby - thank goodness my sister was here all day. Today a friend took both boys for the day so that I could rest (thank you!). Next week Aaron will be in Canada for work, and my mother will be here to help. But I still feel overwhelmed.

I'm tired. I'm tired of being tired. I want this all to end. I want to be healed right now. Obviously right now isn't God's timing, or this tube would be out of my chest. I've seen God use this illness to do great things for His kingdom. Even tonight I read an email from someone who needed to read/hear something I typed in my last email. I know that God's plan is perfect, and that He doesn't make mistakes, but sometimes I wish this road wasn't so hard. I've grown so much as a person through all of this, but I'm tired of growing. I'd like a break. Aaron would like a break. I guess that's what God gave us last week when I felt better than I do now.

So, I don't have any pearls of wisdom that I've learned to pass onto you tonight. I don't have any sunshine to spread at the moment. Right now it's just raw emotion. I'm tired. I'm struggling. I need a Hur and an Aaron (Exodus 17:12) to come along side me and hold up my arms as this battle continues to be fought.

~ Julia

#26 - Make a joyful NOISE

Date Sent: Thu, Oct 2, 2008 at 4:52 PM

"Make a joyful NOISE unto God, all ye lands" (Psalm 66:1)
"Sing aloud unto God our strength, make a joyful NOISE unto the God of Jacob" (Psalm 81:1)
"O come, let us sing unto the Lord: let us make a joyful NOISE to the rock of our salvation" (Psalm 95:1)
"Let us come before his presence with thanksgiving, and make a joyful NOISE unto him with psalms" (Psalm 95:2)
"Make a joyful NOISE unto the Lord, all the earth: make a loud NOISE, and rejoice, and sing praise" (Psalm 98:4)
"Make a joyful NOISE unto the Lord, all ye lands" (Psalm 100:1)

I've never been one of those girls with a pretty singing voice. You know what I mean - one of those women who sit behind you at church and sing perfect harmony (or melody) - one of those women who God has blessed with being able to sing a beautiful song. While you are trying to sing along you're totally distracted by (and a little envious of) their voice. So, rather than focusing on the meaning of the words you're singing, all you can do is focus on how lucky they are to be able to sing like that. I can't even sing and clap at the same time - never been able to. But when I was singing along with people, I could at least make my voice match the notes they were singing, and sing the basic notes to a song.

Well, seven months ago that changed. When I was in Pittsburgh, I got to the point that I couldn't breathe on my own anymore and had to be intubated. I was very pregnant with our second son, and lying there in a hospital bed with a machine breathing for me. (I can't imagine how difficult it was for my husband to sit there and look at me like that!) After almost a week of being intubated, they finally pulled out the tube going down my throat, and I coughed out a raspy few words. My sore throat got better and I could talk again. But I couldn't sing. At first I didn't have the lung capacity to sing, but as that improved, I noticed that it was more than that. It was weird - my singing voice became much deeper than it used to be, and most of the time I just couldn't force myself to hit the right notes. Oh, and my voice cracked a lot. I did some research on the internet, and then spoke with my doctor in Pittsburgh about it last month. Apparently it's pretty common for people to have difficulty singing after being intubated. What probably happened is that my throat was irritated by the tube in my throat, and it got inflamed, and scar tissue formed. The doctor offered to schedule me an appointment with a good Ear, Nose & Throat doctor who could look down my throat to tell me if it was permanent damage, or if maybe they could use a laser to burn off the scar tissue. The process didn't sound appealing, and I decided it wasn't enough of a problem for me to bother, I'd just go through life being the out-of-key person you heard singing behind you. I resigned myself to that fate, and sent out an email to some friends telling them the sad story of me not being able to find my voice.

One of my college girlfriends (who got my email) sent me a cd created by a woman she knows who is an alto. This way since I was singing/crackling low notes the best, I could listen to something that I could potentially be able to hit some of the notes. Well, the day it arrived in the mail, I grabbed the mail on the way to do some shopping. So, I popped it in the car's cd player as I drove. By the time I got to the second song I was sobbing. It's called "Precious Lord" (an old hymn by Thomas Dorsey), and is about how when we're in our deepest, darkest moments, when we are about to lose all hope, we beg God to come extra close to us and hold our hand so we don't slip, fall and give up. Since I was alone in the car I sang along (if you can call what I was doing singing). I sang the whole way to the store, sang it in my head the whole way through the store, and sang it the whole way home again. As I got back home, and was pulling in I realized that my voice wasn't messed up. I was actually hitting the notes! I was shocked (and totally red and splotchy from crying out to God as I sang the lyrics). When I went inside I got caught up in what was going on and forgot about it.

Then this past Sunday I noticed that I did okay singing at church. But it wasn't until Tuesday Morning Bible Study that it hit home to me. I was standing there beside a friend (who I think I sent that email to) and thought "goodness, she's going to think I'm full of it because here I am singing just fine." It was at that point that I realized I AM SINGING - - - ON KEY (most of the time) - - - AND NOT JUST THE LOW NOTES! So, what's the point? God's healing my voice, that's something the doctor couldn't promise me would happen! There's nothing new with that (I mean - it's AMAZING that God's healing me at all!), but God has already promised that this terminal illness won't last forever, so being healed when the doctors don't expect it isn't a new concept to me.

God told us to make a JOYFUL NOISE over and over again in the Bible. He didn't ask us to sing (beautiful) harmony and be that voice you're secretly envious of. He asked us to make a NOISE. I briefly wrote about the lessons I've been learning from the book of James about considering it pure JOY when we face trials of any kind (James 1:2). I've become more joyful, but wasn't making a joyful noise. I don't mean only in terms of singing.) I was singing encouraging scriptural songs to help me cope with the rough times, but my mind - my spirit - my voice wasn't making a JOYFUL NOISE to "God our strength" (Psalm 81:1). When I was finally willing to do that is when God came down and touched my scarred voice box. God never blessed me with a beautiful voice, but He's asked me to use the voice He DID give me. When I stepped outside my comfort zone and ignored the horrible sounds my voice was making, and used what ability I DIDN'T have, that's when God stepped in and made the little I had beautiful (okay - not beautiful, but MORE beautiful).

But this is true of so much more than just our voices. What are the "gifts" that you don't think ARE your "gifts" that you need to be using anyway. What is it that you're not great at - being hospitable, being friendly with people you don't know at church, helping in the church nursery, using the word "God" (I mean other than swearing) in conversation with people? God doesn't ask us to only give Him what we're GOOD at - what comes naturally to us. He asks us - countless times in Scripture - to make a joyful NOISE. When you're willing to do that with abandonment, without being self-conscious of how badly it sounds or looks like, that's when God will bless you. Maybe God wants you to invite someone (you don't know or don't know well) home to lunch after church on Sunday. Maybe you're shy and God wants you to bake some banana nut bread and take it to that neighbor you don't know - you only have to chat at the door for a minute or so and God can use that contact to open the door down the road - the door of friendship, or the door of evangelism. Maybe you're busy, but God wants you to make the time to start going to Wednesday night Bible study or Sunday evening service. Maybe you feel distant from your family members, and what He wants is for you to turn off the tv (you forget about the show you were watching by tomorrow anyway) and spend quality time with your family instead. Whatever the area, when you're willing to make a joyful noise, God will turn it into something beautiful. So, let's go make some noise.

~ Julia

#25 - My rainbow

Date Sent: Tue, Sept 16, 2008 at 3:34 PM

One particularly confusing thing about my dealing with pulmonary hypertension is that when I'm sick I don't feel good - - - when the medicine is doing its job, there are lots of side effects and I don't feel so good - - - when there's too much medicine for my body to handle, the side effects get extra intense and I don't feel good. Sometimes it's really hard for me to know if I'm progressing (ie getting better), or getting worse because either way I don't feel so great. Two side effect of chemo (for those who have cancer - which praise God I don't have) are violent nausea and losing your hair. The medicines I'm on don't have those kind of blatant side effects. The side effects I have are because the medicine I take (both the Viagra and the constant iv medicine) dilate my blood vessels - so all the side effects are the result of the "healthy" blood vessels in my body (remember, the only "sick" ones are in my lungs) being dilated too. But since they're all connected, the only way to have the ones in my lungs dilated (which is what needs to happen) is to dilate all of them in my whole body.

My last email mentioned that my doctor in Pittsburgh told me to only take half of the originally prescribed amount of Viagra. This is because the side effects were too intense - not that I couldn't "cope" with them, but they were showing that the "healthy" blood vessels in my body were being dilated too much. After decreasing the Viagra, I had a good week or two. Then life got rough again. I was exhausted all the time - spent two weeks barely having the energy just for a daily shower, let alone being a mom/wife/house-cleaner. Well, this past Friday, the doctor's office in Pittsburgh phoned to see if I was doing any better. Since I wasn't, they said he wanted to see me on Monday. (yikes! - it's always really scary when a doctor says he wants to bump another patient so that he can see you!) So, my mother drove the four hours back to our house to watch the boys, and Aaron and I drove to Pittsburgh Sunday for Monday's appointment. I wanted the doctor to see the whole picture of how I'm feeling, so I took my Viagra not too long before the appointment. That way he could see how I was physically reacting to it these days.

As soon as he walked in the room he noticed all the physical "side effects" - I was red, the bumps that are on my arms/legs/back, etc. After talking to me and listening to my heart and lungs, he said that it was really good that he was able to see me with his own eyes. I am NOT having an allergic reaction, but the bumps ARE caused by the medicines (they're a side effect that's not as common as others, but it is okay that I have them). I am currently taking 19 ng of the iv medicine - that's not really all that much (he has some patients who take over 100!). He said that everything I've been feeling lately is because my "healthy" blood vessels are OVER dilated (he said that the exhaustion was because not enough blood was getting to my brain, etc.). The iv is much stronger than the Viagra, so the iv stays and the Viagra goes - NO MORE VIAGRA FOR ME!!!!!!! He "didn't expect" that to be a problem since I'm on such a relatively small dosage of both drugs - but our God is the God of the unexpected blessings and miracles! Do you understand how HUGE of a miracle this is!?!!??! God's healing me SO MUCH that the doctor has STOPPED one of the two drugs that are medically keeping me alive! There aren't words strong enough to explain the amount of joy that's bubbling over inside of me!

THERE'S MORE - After he did his exam, he said that my heart is healing SO MUCH (it's MUCH quieter than it was in June when he saw me last), and it's obvious that the dangerous pressures in my lungs are also LOWER (though definitely not normal yet)! So, I'm allowed to have some coffee again (I had been sneaking it now and then when I was so exhausted just to try to get through the day). And I may INCREASE the amount of sodium in my diet! When I was discharged in March I was taking 20 mg of Lasix every day to counter the amount of swelling in my hands/legs (this was caused by my right-side heart failure). The past two or so weeks, I've only taken one pill (the morning after a pizza binge). He said that I "can't have as much sodium as a normal American gorges on," but I can increase the amount I consume. Now the restriction is to follow what my body's telling me - if I swell, decrease sodium until the swelling goes away!

A while ago, God had told me to accept help from people to do the basic things I need done - cleaning, laundry, childcare, etc. But my pride got in my way - as I was getting stronger, I had done more myself instead. Last Wednesday (before I knew the medical reason why I felt so horrible), God told me that He brought me to a place where I would be forced to obey (I was exhausted and at the end of my rope). Now that the doctor told me that those tough times were because of TOO MUCH medicine - a sign that I'm getting BETTER, not me getting sicker, it would be easy for me to renege, and not do what God instructed (again). But, I've learned that lesson. I'm finally allowing more people to help (it can be really hard for a "giver" to accept being a "receiver").

Last Thursday I met with two ladies for prayer, and ended up crying about how tough the past two weeks had been for me. I wasn't complaining or whining, I was letting down my emotional guard and admitting that I needed physical help and emotional support. I mentioned that I've learned that whenever there's a trial/set-back/etc., there's always a hidden blessing. God has something GOOD in store for me (and for you too). But after two weeks of misery, I still didn't see that blessing. I knew it had to be there somewhere, I just didn't know what it was, and was getting discouraged because I needed to see something positive coming out of the pain. The ladies encouraged me keep trusting God to remain faithful - He's brought me so far already, He's not about to just abandon me now. And of course, there was a blessing - I just needed to wait for the doctor to see me to tell me what it was. Now that I've stopped the Viagra I already feel better. Once my body gets used to it NOT being there I should feel even better again!

I'm taking a Bible study on the book of James. Today we discussed the first eleven verses of chapter one. Here's part that's always meant a lot to me, but has new meaning now that I've been going through this "medical trial": "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him. (James 1:2-5). It's awfully hard to view the tough struggles we face in life (sickness, huge disappointments, loved ones not following the God they once knew, financial difficulties, work stress, etc.) as PURE JOY. That's something that I've been working on this past week. I still haven't mastered it - I've got a long way to go - but I'm learning more about how to do it. Joy isn't happiness - it isn't a feeling - it's a state of being, a CHOICE.

Even when all we see are storm clouds gathering around us ready to let loose, there's a hidden blessing (a rainbow) - SOMEWHERE. DON'T QUIT LOOKING UP - NOT UNTIL YOU'VE FOUND THE BLESSING THAT GOD HAS IN STORE FOR YOU BECAUSE OF THE STORM (NOT IN SPITE OF IT).

Keep looking up!

~ Julia

#24 - Mixed Blessings

Date Sent: Mon, Sept 8, 2008 at 1:39 PM

Well, it seems like AGES since I've sent out an email update. I know it's been way too long because I've started to get several phone calls a day asking how things are going. Sorry for the lapse in communication. Life has been crazy around here. With it being the end of summer and the unofficial beginning of fall we have a lot more going on. I'm part of a Tuesday morning ladies Bible study, and a MOPS group - both of which are starting again after taking the summer off. So, I've been rushing trying to finish projects before there is more on my calendar (more to try to squeeze into my already tiring days). I really look forward to both of those activities, though, so it's well worth the spent energy!

The last update I sent described my visit with my cardiologist about the redness/infection that was around my hickman catheter. He gave me an antibiotic, which made us much less worried about the infection spreading into my bloodstream. But by the end of that same week, the infection still wasn't clearing up. So, we took photos and emailed them to my doctor in Pittsburgh. I told him that I thought it was continuing to spread because when I was at the ER to have the infected suture taken out, they used a thicker (but still clear) dressing over the site than the one we used at home, and the moisture produced by the infection had gotten trapped. I asked my doctor permission to remove the dressing and let it air out. After seeing the photo, he agreed with me, and gave permission to remove it for "several days" to see if that helped. We prayed really hard that as it dried out, we weren't swapping one infection for another one as the insertion site was exposed to other airborne germs. It ended up taking just over two weeks, but finally cleared up! Praise God!

At the tail end of those two weeks, Alex (our 3 year old) got a cold, and gave it to little Harrison. I was VERY nervous caring for them because the last time I got a cold (in March), I was hospitalized again because it made it so difficult for me to breathe. So, I prayed extra hard and used almost an entire bottle of hand-sanitizer. God kept me safe and I didn't get the cold. Praise God AGAIN!

I had mentioned in a previous email about how horrible I felt each time (3 times/day) that I took my Viagra (which opens the blood vessels in my body, including my lungs - helping me to breathe easier). When I emailed my Pittsburgh doctor the picture of the infection, I asked him about the Viagra also. HE GAVE ME PERMISSION TO TAKE ONLY HALF OF THE ORIGINALLY PRESCRIBED AMOUNT!!!!! I was instructed to continue increasing the dosage of the iv medication. But I was finally told to take less of SOMETHING! This decrease has made a dramatic difference! Praise God YET AGAIN!

I've been getting an increasing amount of bumps on my arms and legs for a couple weeks now, and thought it was because I had started to use bleach alternative on my bath towels. So, I rewashed everything thinking that the bleach was too strong (something similar happened to me as a child if my mother used certain laundry soaps). On a whim, I phoned the Pittsburgh doctor this past Thursday evening and left a message wanting to know if I could use hydrocortisone cream on the bumps (because they itch), or if that would interfere with any of my meds. They returned my call on Friday and asked me more questions about the braille-like bumps. Dr. Alvarez told me not to use the cream. Apparently I have "Flolan rash" - a sign that I'm having an allergic reaction to the drug that's keeping me alive. The current plan is that I'm supposed to stop doing any increases. (I was supposed to do another increase later that same day, so praise God that I decided to call and check about using the cream!) We'll talk again later this week (after we see if it gets better/worse) and he'll decide at that point what to do about it. At this point it's very possible that I'll have to decrease the amount of Flolan that I'm taking.

Considering how much I dislike the week-long side effects I get when I increase the Flolan, I guess it's kinda a blessing (maybe?) that the doctor doesn't want me to increase anymore (at least for now). The increases have been too much for me to handle doing them every week, so I've generally been increasing two weeks in a row, and then taking a week off. This "longer break" should give my body time to get over some of the side effects. So, praise God for that, at least.

This past week I was tired again. I spent most afternoons on the couch (holding my sleeping Harrison) - and enjoying the time both because these days with him will pass way too quickly, and because I didn't have the energy to be productive. Aaron ended up doing all the cleaning (all that got done anyway) over the weekend - praise God for my AMAZING HUSBAND! I think this sudden tiredness correlates to the increase in the amount of bumps - my body is reacting to the drug by the bumps AND by the tiredness.

Maybe this is as good as it's going to get for me. Maybe I've peaked on how much I can do, how much energy/stamina I have, how good I'll feel - - - that is, until God decides to heal me. I was looking forward to feeling "normal" eventually because of this drug, and sometimes would forget to thank God's for His hand in all of this. I took for granted how much better I felt already rather than focusing on being grateful for how far God's brought me. Oops! Well, now that I've been reminded to praise HIM MORE rather than just this drug, I'm not planning to make that mistake again.

Last week (about an hour before I phoned the doctor asking about using the cream on my bumps), a friend pointed out a verse in the Bible that she thought applied to me. It's one of those passages that might not mean anything to you - that is until you hit that point of extreme desperation because you feel so overwhelmed that you ask God if He really knew what you could handle. Those are the days you beg Him "to take this cup from me" and forget that the rest of the verse says "yet not my will, but yours be done" (Luke 22:42). I guess the difference is that you can handle so much more if you "cast all your cares on Him" (I Peter 5:7) like we're supposed to, rather than trying to cope alone. I later took the time to look up the passage ... and then kept reading. I'm SURE the passage ended up meaning so much more to me than my friend imagined. As I read it even now, so many friends come to mind for whom it would apply (even though their life situations/pain might be the result of different trials than what we're going through). Some of those friends get these emails, so I wanted to include the passage. But even if you're not going through one of life's overwhelming trials right now, the last two sentences apply to you anyway - because of your faithfulness to remember me and my family in your daily prayers.

2 Corinthians 1:3-4,8-11
Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. ... ... We do not want you to be uninformed, brothers, about the hardships we suffered ... We were under great pressure, far beyond our ability to endure, so that we despaired even of life. Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many.

Thank you for your continued prayers as we wait and see how God uses this most recent "hiccup" for His glory.

~ Julia

#23 - I was sent to tell you...

Date Sent: Tue, Aug 12, 2008 at 11:33 AM

I sent an email on Sunday asking prayer about an infection that was developing very close to the catheter going into my heart. Thank you for all of your prayers! They seem to be getting a "yes / I'll take care of it" answer from God.

On Monday morning when I woke up it looked like the infection was spreading. There were three additional red raised areas under the dressing, and each had yellow centers ("pustules" my mother called them). So, I phoned the cardiologist that treats my PH locally (my "in case of emergency" doctor - since the one in Pittsburgh is the one actually treating my condition), and left a message about what happened over the weekend, and the new developments. His nurse returned the call, and told me that he was on duty at the hospital. He said for me to go there (to a particular office) and have him paged, and he would take a look at it. How ACCOMMODATING! So, I phoned Aaron who was already at work, and he met me there. The doctor listened to our story and then confirmed the need to be proactive about it. He took blood cultures to check if the infection has spread to my blood, and ordered an antibiotic (the ER doctor "didn't want to go to an extreme by prescribing an antibiotic"). We're supposed to change the dressing every day or every other day (it's usually once a week), to help keep the skin disinfected while it's healing. We feel SO MUCH BETTER having an antibiotic and having someone who knows me, and about PH look at it. So, now we're playing the waiting game for the infection to clear (and still praying that it doesn't spread).

I was very nervous about this infection - I REALLY don't want to be hospitalized again. In Pittsburgh we were told that a line infection or blood infection was one of the seriously bad things we needed to watch out for. We have been extremely careful about how we've been keeping the whole area clean over these past six months. But it happened anyway. I had been wondering why.

I thought I had heard God tell me to do something on Sunday, but because of how the day was going, I was questioning if it was God or my own thoughts. (I had been somewhere, but didn't hear His voice until I was about 20 miles away, and to do it would have meant me turning around and I was tired.) The office I was to meet the doctor in yesterday was (I am so bad with distances) maybe 75 feet inside the main entrance of the huge hospital. So, on the way into the hospital I prayed that if it was God's will for me to do that thing, that I would see a particular person while I was there (who I guessed might in the hospital, but I wasn't sure). Well, within three minutes of sitting in the waiting room, God had her walk by the room, look in the window, see us, and come in to say hello. So, God used her and she didn't even know it (and all she had to do to be used by God was walk!). And I obeyed (as soon as the appointment was over). Was this why all of this happened to us - so that I'd do what God wanted me to do? When I was first impressed to do it I was 20 miles away and 24 hours later hadn't taken the initiative to drive there. So, God made sure that I went. Jonah was told to do something by God, and went in the opposite direction (for very different reasons than I did, though). God sent a whale to swallow him until he agreed to do God's will. I'm glad that God sent a friend to me, rather than a whale!

While we were in the waiting room, waiting for the doctor to come, a stranger - young woman (about my age) came in, sat down, and kept glancing over at Aaron and me. A few minutes later she came over and said "I was sent down here to tell you that God says everything is going to be okay." She looked a little nervous (wondering how I was going to react), and had a glow about her. I thanked her and my eyes filled with tears. My fears were gone. Just as God had sent me to that hospital to do something, He sent someone else to let us know that I would be okay (I'm tearing up now as I remember this experience). She asked if we believed in Christ, and I said "yes," and that God has sent me to give people messages before. I thanked her for telling us. She said that when He tells you, you just have to do it. I smiled, knowingly. The girl remained in the waiting room while we saw the doctor (she told us that she'd be praying while we were with him), and then gave us a questioning thumbs up when we finished. We returned the affirming gesture - everything had gone well. As I left the room I turned to wave and whispered a "thank you." It was my turn go do what God had instructed.

~ Julia

#22 - Infection

Date Sent: Sun, Aug 10, 2008 at 5:25 PM

Yesterday morning I noticed that the insertion site of one of the sutures holding my hickman catheter (going into my heart) was red. This morning there was white gunk coming out of it. So, we called the visiting nurse who used to come, and he told us to see my doctor TODAY. Since it's Sunday, and there's no one at the doctor's office, we went to the ER at the Hershey Medical Center. When you go to an ER you can spend hours and hours just waiting to be seen. So, we prepared to bunker down and wait - I took a book, and Aaron had some of his beloved car magazines. But, this was the fastest trip we've ever experienced! We were in and out in probably three hours! The doctors there agreed that it is infected. So, they removed the suture, cleaned the site very well, and put in a new suture away from the infected area. They're doing a culture on the goop and will call me if I need antibiotics.

Please join us in praying for God to heal this, and for it not to spread to the hickman catheter (about a 2 millimeters away) and into my heart. If the infection spreads to my heart then I'll have to be hospitalized, and probably have a new hickman put in. An infection in the heart and bloodstream can be devastating. I'm supposed to follow-up with my cardiologist tomorrow. He'll probably tell me to "keep an eye on it," and go back to the hospital if it gets worse.

Thank you for your faithful prayers - now as always.

~ Julia Feitner

#21 - "We wrestle not..."

Date Sent: Thu, Jul 31, 2008 at 2:07 PM

"We wrestle not against flesh and blood, but against principalities, against powers, against the rulers of the darkness of this world...." (Ephesians 6:12)

Last night we had a wrestling match.

A couple weeks ago I was asked to share my testimony (in 5 minutes) near the beginning of the Wednesday Night Bible Study at our church last night. It's a rather large church, with probably 3000 attending on Sunday morning. So, being as shy as I am, I should have been nervous - but I wasn't. A couple months before I was officially asked, Aaron and I knew in our spirits that it would happen, so I had plenty of time to get over being scared to talk in public.

Yesterday Alex spent the day with a friend and her children at the local pool. They offered to take him with them to church afterward, and we'd pick him up there after the service. It was a wonderful day for him - he absolutely LOVES swimming! I'm not allowed to go in a pool (or bathtub) because the catheter going into my heart would get wet, so he doesn't get much opportunity to go. Alex had a blast! But God had planned for Alex to go for another reason - - he wasn't in our car as we went to church last night.

We were probably about two miles or so from the church when suddenly the machine that pumps my continual iv medication started beeping like crazy. It was malfunctioning and wasn't pumping the life-sustaining medicine into me. The doctors warned us that if I'm disconnected for even five minutes the blood vessels in my lungs will collapse (because they're used to the medicine opening them) and I'll die. So, the clock was ticking - VERY LOUDLY! Aaron pulled over and ran around the car to grab the back-up pump and prepared iv medicine cartridge that we always must have with us. While I tried to control my breathing and keep my heart from racing (from anxiety), Aaron got everything ready to switch me to the back-up. Just about the time he got to my side of the car two other vehicles (with friends from church in them) pulled in behind us and jumped out to find out what was wrong and how they could help. (God sent friends just when we needed them to reassure us that we weren't going through this terrifying experience all alone - thank you Brad/Lisa & Eric!) I could feel my lungs closing as I waited for the new medicine to get connected and make its way up the tubing to my heart.

I was asked if I needed to go to the hospital, but once it began to kick in we knew I wasn't going to die. At that point the worst of it was over. There was absolutely no human reason why the machine would suddenly stop right then - it had to be a spiritual attack aimed at keeping me from speaking at church. I was more determined than ever to share what God's been doing in our lives, So, I pushed through, and everyone got back in their cars and we drove to church together. We pulled in next to the van that Alex was in (he was in one of the vehicles that stopped to help), and he jumped out all excited to tell us about swimming. God, in His providence kept Alex from seeing what had just happened minutes before. With the stuttering problem he's had recently, that would have pushed him over the edge. Every time he went to play with friends he'd be scared that something was happening to mommy. Thank you God, for protecting me ... and my son!

So, we went into the church and after Alex and Harrison were taken to their nurseries, the emotion of how close I was to dying yet AGAIN began to hit me. I cried through all of the singing at the beginning of the service. Then, it was my turn to talk. I was still shaking so hard from the experience that I had to sit down to read the speech I had typed. But I made it through it - very tearfully. When I was finished, something amazing happened. Someone called out and asked the pastor to pray for me right then. He asked everyone who needed healing of any kind to stand up. People popped up all over the sanctuary, and the rest of the congregation surrounded them and held them up in prayer! While people were around Aaron and me praying, all I could do was cry and thank God that His spirit was released to move through the congregation in that way. I've never been at a service at our church like that. It was amazing! Amazing things must have happened during that prayer time or Satan wouldn't have tried so hard to keep us from getting there!

By the time the service was finished my heart had calmed back down and I could almost breathe "normally" again. I was emotionally exhausted, though. God helped both of our sons to sleep in this morning so that Aaron and I could get much needed rest after the wrestling match we won last night. God continues to do amazing things in our lives. But you don't have to have a near-death experience to see God work in your life. When's the last time you shared what God's doing in your life with someone? When's the last time you let go of the reigns and let Him work?

~ Julia

#20 - Our story (the highlights) ... so far

Date Sent: Tue, Jul 29, 2008 at 9:40 PM

I have had lots of requests from people recently to explain what's happened in our lives. We've been sending email updates since I was hospitalized in February of 2008, but it can be hard to piece everything together based on them. So, I decided that it's time to give some chronology - at least of the time when I was in the hospital, and correct some of the understandable misunderstandings that are floating around. So, here are the highlights.

At my scheduled obstetrician appointment on Thursday Feb. 7th (I was 32 weeks pregnant), I told him with lots of tears that something was wrong - really wrong. With my previous pregnancy (Alex who is now 3) I developed HELLP Syndrome at the end of the pregnancy. They didn't know it until 18 hours after he was born. That was when I suddenly had two seizures (because of HELLP - not because of epilepsy) and almost died - they even pulled out the paddles but fortunately didn't have to use them. Because of that medical history, my obstetrician wanted to do some tests (urine and blood work) to see if I was developing HELLP again. The results weren't conclusive, but said that it was definitely a possibility. Up to this point in the pregnancy I had only gained 6 pounds. He decided just to monitor me.

The following Thursday - Valentine's Day 2008 I had another appointment with him. Aaron came with me to this appointment (so did Alex since we didn't find a babysitter). At this appointment, the dipstick they did on my urine sample said that I definitely had high amounts of protein in it (a sign of HELLP Syndrome). I had gained an additional 7 pounds of fluid retention this week alone (more than I had gained the entire pregnancy up to this point!). Also my blood pressure was high (for me). The same doctor who saw me the week before (who happened to be the Chair of the whole Obstetric Department) called the hospital (which was just down the street) and had me admitted to Labor and Delivery immediately. They were very concerned that I was developing HELLP Syndrome. Once admitted to the Labor and Delivery unit at the Hershey Medical Center, I was to do a 24 hour urine (where all of my urine during that time period was collected in one large bottle) to get a more accurate reading on how much protein and other substances were present. This test also showed high numbers which wasn't good. I was then 33 weeks pregnant.

On Friday - about 15 minutes after the 24 hour test finished Aaron and Alex came to see me. Aaron's father arrived soon after to watch Alex so that Aaron could be with me. About 15 minutes after they all arrived, my face was very red, and I thought I was going to pass out on the way from the bathroom back to my bed. So Aaron rang for the nurse and told them something was wrong with me. Nurses came in and tried to figure out what was wrong. They put a pulse-ox on my finger and it read 69 (it should be at or close to 100%). They assumed the machine must be broken, got another one - which read 72. We immediately sent Alex home with Grandpa, and just after he left the room it filled with nurses and doctors.

I spent a very long weekend in the hospital undergoing seemingly endless testing of all sorts to try to determine what was wrong with me. At one point the doctors thought I had a pulmonary embolism (blood clot in my lung) even though the cat-scan didn't show one. It was later determined that I did not have one. Over the weekend I continued to retain fluids, and was given a constantly increasing amount of oxygen - finally though a face mask so I could get more than the nasal canula could give. I was no longer able to get out of bed, or even to recline from an upright sitting position or the oxygen levels in my blood would dip dangerously low. (Interestingly enough - the protein in my urine disappeared over the weekend. It was like God put it there so I would be hospitalized and they'd discover my real problem, but then took it away once they realized that something else was going on.)

Late morning on the following Monday a group of doctors came in and told me that they finally had a diagnosis. I have pulmonary hypertension. One of the doctors wanted to transfer me to the ICU immediately and start me on the iv medication that I'm on right now, but the doctors couldn't agree. It was very possible that the iv meds would do serious damage to my baby. But they didn't think I'd survive if I delivered him before they started the iv meds. They couldn't agree, and finally decided that either way they didn't know that either one of us would survive this ordeal. They wanted to transfer me to another hospital with more (or rather, ANY) experience with this. We were given about 30 minutes to decide what to do because I continued to decline. The doctors phoned Johns Hopkins and U of Penn (in Philadelphia). One of them wouldn't take me, and the other wouldn't return the phone call. So, my mother suggested they try Pittsburgh. The doctors phoned, and there were two hospitals who agreed to work together. Aaron and I tearfully prayed about it, and agreed to go. For those of you who don't know the Hershey Medical Center, it's a huge teaching hospital that patients are transfered TO not out of. It took them a long time to even find the necessary paperwork to transfer me - my nurse told me that she didn't think anyone had EVER been transfered out of the Obstetrics Department. They wanted to send me via Life Flight because I was so sick, but it was icy outside and they had problems getting a helicopter with a de-icer for the propellers. So, we had to take an ambulance for the 4 hour trip. This ended up being a God-thing because Aaron wouldn't have been allowed in the chopper, but was allowed in the ambulance. The ambulance crew was about to refuse to take me (which they ARE allowed to do) because I was so sick they thought they couldn't handle me if something happened. But after meeting me, they "had a good feeling" and agreed. I remained stable the entire way there.

I was admitted to the ICU at Magee Women's Hospital in Pittsburgh at about 1:30 am on Tuesday morning February 19th. I spent about 45 minutes telling one of the nurses my medical history while they hooked up all the monitors/ivs/etc. Just after I told them everything they needed to know they told me to stop talking because my oxygen saturations were dropping too low. A doctor then put a swan in my neck (like a permanent right heart cathader). This is only supposed to be done with the patient lying flat, but I couldn't do that and still breathe, so he did his first ever with the patient sitting up. The swan would tell the doctors the actual (not guessed) pressures in my lungs - which were registering 97 (pulmonary hypertension starts when your pressures are 20 - they are supposed to be 12-17 for someone my age). Just after the swan was done the doctors needed to intubate me because I could no longer breathe on my own. The next thing I clearly remember was several days later (and in a different hospital's ICU).

I think I was intubated around 3:30 am. The ICU doctor spent the rest of the night contacting dozens of specialists from at least two hospitals about how to care for me. Several times during the night Aaron and his parents (who were in the waiting room) were told "to prepare to call family" because I wasn't stabilizing and they were losing me. Later that morning there was a conference of lots of doctors meeting down the hall from my room talking about how to treat me. This conference was still going on when I got to the point that they had to deliver Harrison "now or never." So, they all came down to my ICU room and got started. During the emergency c-section (about 8 hours after I arrived) there were over 30 people in the room (from ICU, NICU, cardiology, pulmonology, obstetrics, anesthesia, and nurses too). They actually broke the sliding doors to the room because there were so many people trying to crowd inside all working to keep Harrison and me alive. I'll shorten the delivery story just to say that it wasn't a "normal" c-section. One example is that my bed was at a 45 degree angle to help drain blood away from my heart. Long story short - I survived and Harrison did great. He was born 6 weeks early and was only 5 pounds. He had to go to the NICU for 9 days while he learned how to suck a bottle and gained weight. By the time the next hospital I was being transfered to found room for me in their Cardiac ICU, it was the next day, so I was transfered to UPMC's Presbyterian Hospital (3 blocks from Magee) on Wednesday.

Once at Presby they started me on the iv medication (Flolan) that opens the blood vessels in my lungs. This was quite the ordeal. They increased the dosage as fast as they could without having the blood pressure in the rest of my body drop dangerously low. I began to have some memory during this experience (I was on strong conscious sedation because I was intubated and that's not the type of experience one wants to remember). I was so glad that the doctor in Hershey had explained the side effects of Flolan to me (his blunt explanation actually terrified me), so that when I "regained memory" in Pittsburgh I knew that the hellish experience I was going through was expected and wouldn't last forever. By Friday they finally decided to take out the breathing tube and see how I did. My oxygen sats dropped, but with a face mask pumping oxygen to me at the maximum volume I did okay. The most a nasal canula (the kind of oxygen tube with the two little prongs in your nose) can give you is 15 liters of oxygen per minute (I think). The oxygen put out by a face mask is measured differently, but 15 liters from a nasal canula is about 35 liters on a face mask. I was at 95 liters/minute on the face mask for the next week. I still had to sit straight up or my oxygen levels would drop dangerously low.

After being in ICU for a week, I was finally moved to a step-down unit (not a regular room, but at least out of the ICU). About 24 hours after I was transfered, something went wrong when they changed over my Flolan (the iv that I'm continually on) to a new bag. They still don't know how it happened, but I must have gotten a bolus (extra amount) of possibly one or two DROPS of the medication. About 30 minutes later (the time it took it to finish making its way up the iv tubing), I started to feel like the world was coming to an end. I went from feeling "normal" to thinking I was about to die in less than a minute. Aaron got a nurse immediately, and as soon as someone came in I was "coded." This means that they sent a STAT (which means faster than "as soon as humanly possible") message over the hospital intercom for people to come running and help. Aaron was sent out of my room as it filled with doctors, nurses and respiratory people who were trying to save me. After a while the doctors began to stabilize me again, and after another swan (a special type of tube) was put back into my lungs to monitor it's pressure, I was moved back to ICU for another day. This experience was terrifying for all of us to go through. (Now I definitely know what it feels like to have too much medicine in case there's another "oops"!)

On Thursday, February 28th (9 days after he was born) Harrison had gained enough weight and was eating well enough from a bottle that he was discharged from the NICU and ready to go home. I wasn't. So, some friends from our church (who had been watching Alex all this time) drove out to Pittsburgh to take Harrison home with them (they have 4 kids of their own - so their house must have been extra chaotic with our additional two!). Before leaving town, Harrison was brought to my hospital and we had about two hours to bond as a family before he went the four hours back to Mechanicsburg. This was my first chance to meet my son that I really remember (I have a fuzzy snap-shot image memory from the day after he was born).

I wasn't ready to be discharged yet. I hadn't even walked by myself to the bathroom yet, and had been "promoted" from the full-face mask oxygen to a nasal canula just before Harrison came (in time for pictures - yeah!). So, I spent a long weekend gaining strength and stamina. After the all the arrangements were made for visiting nurses, we were trained on how to mix the iv medication ourselves from a powder state, I was finally discharged the following Tuesday, March 4th. When I went home I was still on constant oxygen and it took me several days before I was able to climb the flight of stairs at our house. An hour or so after we got home, Alex and Harrison were brought back to our house. We had a very tearful, very excited reunion. All together, I was in the hospital almost three weeks. Aaron and my mother took turns staying by my side the whole time - the staff was so nice to let them do that. That's not usually allowed in an ICU room.

God has brought us so far over these past five months. It was six months ago this week that I finally admitted I didn't have the strength to clean my own house (two weeks before I was hospitalized) and finally agreed for my mother-in-law to drive the hour and a half to our house to do my cleaning. Today a lovely neighbor came to watch Harrison (while Alex was playing at a friend's house) and I did ALL THE CLEANING BY MYSELF! I doubt I'll push through the tiredness next week to do it alone, but at least I have done it ONCE. Every day is full of new hurdles and new lessons learned. I wouldn't wish this experience on my worst enemy, but the personal and spiritual growth it's produced is well worth it. Hope this helps explain what happened while I was in the hospital(s) a bit for you, and answers some of the questions I've been getting recently. Until next time.....

~ Julia Feitner