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I was told yesterday that b/c the c-section is being done in the main OR that the policy is no husbands. Please pray Milo will be able to.

To keep updated on what's going on with us, especially on Wednesday, Milo has set me up with a twitter account. I don't expect to be "tweeting" at all, but I'm sure Milo will keep everyone updated throughout the day. You can see twitter posts in the far right column just below our family picture. Also you can sign up with the Feed My Inbox widget, also in the right column. When you sign up with this you will receive our post in your inbox. If we update 4 times a day you will be updated just once a day in your inbox. Thank you all so much for your support of our family during this time. It means so much to us that you want to keep updated so that you can pray with us through these days.

We're leaving for Charleston tomorrow. I can't believe it's already here. We saw our pediatric cardiologist, Dr. Lucas, on Tuesday. It was a good visit. Josiah seems to be doing surprisingly well. He now weighs 6lbs. 1oz. There were a couple of things that stuck out to us as we talked to Dr. Lucas about what's to come. First, he told us that after we met with the ped. cardiologist at MUSC around 26 weeks and Josiah was diagnosed with the atrial septal defect on top of HLHS, he and the cardiologist at MUSC didn't think that I would be able to carry Josiah much longer. The fear was that the septal wall (the wall between the atriums) would close completely and that when that happened blood would begin to back up into the lungs. If that happened the only thing they could do would be to take him at that point. After my visit to MUSC the cardiologists thought that would happen and that it would happen quickly. What no one accounted for was the miracle that God performed on Josiah's heart. It appears that the wall has closed, but as I've mentioned before in a previous post, as that wall began to close, Josiah's heart formed a new vessel that appears to allow blood to leave the atrium rather than backing up toward the lungs. Dr. Lucas is not 100% sure of this vessels function or size or it's ability to help Josiah once he is born because it is so rare, but in my mind it could very well be God's way of saving Josiah's life. What we know for sure right now is that this vessel has allowed Josiah to stay in my womb and continue growing which has been the best thing for him. Milo and I are so encouraged by this little, possibly huge, miracle.

The next thing that struck us while talking with Dr. Lucas is just how complicated Josiah's heart is. We knew this but when you hear it again and this time it's only a week from his birth it becomes reality. Dr. Lucas tried to tell us what to expect the day Josiah is born. He said that as soon as Josiah is born they will take him to the catheterization lab. He compared the speed of this to the cartoons when a puff of smoke trails behind a character speeding away. He told us not to expect to know how much he weighs or even see him, they will take him that quick. When I asked him if we would hear regular updates as to his condition he told us that he couldn't be sure. He said he was predicting the cath lab to be very chaotic (which it is not normally) because there would be lots of people there. Josiah's heart condition is not textbook and so they are not sure exactly what they will do. The plan is to have lots of doctors there to bounce ideas off each other to determine the best course of action. Because of the urgency and "chaoticness" of the first hours of Josiah's life he's afraid that we won't hear many updates. I certainly hope that doesn't happen.

Our biggest prayer is that this abnormal vessel that has protected Josiah so far will function outside the womb and be something that really helps Josiah during the first crucial hours of his life. Please pray that with us.

My husband gave me a wonderful mother's day. He's so great! He started by giving me 3 full photo albums with almost 2 years worth of pictures in it. I absolutely stink at getting our photos into albums, I don't know why, I just can't seem to do it ever. So he put all our pictures into albums and even wrote comments next to them. It was a fantastic gift idea. Then he also gave me 2 kid size sleeping bags (for the girls). This might seem like a weird and thoughtless gift but it too was perfect. Ever since we found out about all the things that we were going to go through with Josiah I made a to-do list of things I wanted to do with the girls before he was born. One of the things was taking the girls camping. Now, I wanted to do that a couple of months ago but we didn't get a chance. It was so thoughtful of Milo to remember that. He planned a whole evening, we cooked hot dogs and ate outside, had a campfire and made smores and then slept in the backyard. The girls loved it! It was a really special time for us as a family. As for me, I only made it until 2am. At that point I came in the house and climbed in my own bed. I thought sleeping on the ground until 2am was pretty good for a girl who is going to deliver a baby in 9 days.

Our evening together also helped me to realize that even though life is going to be different for us once Josiah is born, we'll adapt and still do the things we love to do. It might just mean sleeping in the back yard rather that hiking the Appalachian trail (we probably wouldn't do that anyway).

On Monday, our housing fell through on us. The woman we were renting from got an offer on her place for a three year contract so she decided to go with that. I completely understand, guaranteed rent for 3 years over 2 months. It just sort of left us in a bind. However, our God is always in control and so even though it stressed me out I knew there must be something better out there. A woman from our church had given me a phone number of ministry in Charleston that works with families with critically ill family members. I called there on Monday afternoon and immediately this amazing woman, Melissa Altman, went to work trying to find us housing. By Wednesday she found us a 3 bd condo in Mt. Pleasant, free of charge!!!! It is closer to MUSC than the townhouse we were going to rent in Summerville and it is $1,200 cheaper!!!! The condo is owned by a business owner who uses it for clients. It is available for the first two weeks we will be there. Then it's up in the air. This man's company doesn't have their June calendar complete yet. We are welcome to use it for any weeks that it's available. So we've got 2 weeks of free accommodations and then we'll see from there, but God has once again proven himself faithful so I'm confident that like always our needs will be met.

I had good doctors visits this week. They were short! I only spent 2.5 hours in doctors offices this week. This is down from the 14 hours we spent there last week. They measured Josiah this week and he is now weighing 5lbs. 3 oz. So he's doing pretty good. I'm praying he gains another 2lbs before he's born. That would be amazing! I've been on procardia, a drug to relax my uterus for almost 2 weeks now and that has helped tremendously. I haven't really had many contractions since going on it. If anything it eases my mind. I'm not constantly trying to remember when my last contraction was or how many I've had in an hour. I'm usually not a fan of drugs but in this case... Thank you Dr. Vermillian!



So at this point we are just hanging in there trying to get ready to relocate to Charleston! Milo spent the entire day yesterday trying to get the yard ready for us to be gone all summer. We were given a wooden play set from a family at church (thank you Stovalls), whose boys had grown out of it and so Milo has put that all together in our back yard. It's perfect, with swings, two slides (thank you Yarletts) and a great sandbox. The girls love it and I'm so thankful for it because when we get back home from MUSC and we are home bound for several weeks, maybe months, the girls will have a great backyard to play in.



My mom and dad came over yesterday. Dad stayed and helped Milo work out in the yard and watch the girls while my mom and I went shopping for a mother of the groom dress. We went to one bridal store where I accidentally said mother of the bride dress and the attendant looked at my belly and said, "are you the bride." Whoops! My brothers wedding is the 4th of July so we needed to find her something before everything get so crazy. Unbelievably we had success! After we got home we ate some dinner and then Milo went back to the office to get some things done for Sunday. He's preaching his first sermon this Sunday! I'm proud of him, pushing himself out of his comfort zone.

13 days and counting until we leave for Charleston! They're going to fly by.

Back in October I had a conversation with a friend of ours from church who was going through the struggle of her lifetime. Her husband had recently been diagnosed with a very severe form of cancer. This hit our church like a ton of bricks because this man was an extremely active, young, soccer coaching, children's church teaching, boisterous, dad, who you thought nothing could slowdown. This diagnosis bothered me greatly because it just seemed so unlikely, so unfair. This man has an amazing wife and two beautiful young children who I couldn't imagine without a dad. At the same time all this was going on our church was going through a Bible study called "One month to Live." I was talking with this woman about how I was getting frustrated with this Bible study because it kept asking the question of when you go through "rough times" or look back at the "tough times" in your life and discuss how God was with you through those times. I was just so frustrated by that because in my mind I have never been through a "tough time." If I had to force myself to come up with "tough times" I've experienced it would include not being elected senior class president and sitting the bench more than I wanted to on my college soccer team. Both extremely insignificant. I'm a person who doesn't sweat the small stuff and it really would take something major for me to consider myself to be going through a "tough time."

So I am having this conversation with this woman about how I don't have a clue what it's like to experience something tough in my life. I was telling her how I was watching her and wondering if I ever had to go through something like she was going through how would I react. What would my faith look like. Would I be able to sing the worship songs praising the God I love so much while I was in the middle of it. I didn't want to sing then about the marvelous love of God if I didn't think I could sing it and mean it during a storm in my life. There is this song "Blessed be your name," that I love to sing, that talks about loving God when things are good and when things are bad.

Blessed be Your name
When the sun's shining down on me
When the world's 'all as it should be'
Blessed be Your name
Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name
Every blessing You pour out I'll turn back to praise
When the darkness closes in, Lord
Still I will say
Blessed be Your Name

Her situation was making me really reflect on how authentic or not my faith really was. Could I really sing this song and mean it when my "road was marked with suffering." If not then I shouldn't sing it when "the worlds' all as it should be." I was striving for my faith to be authentic, but I was telling her I had no way of knowing because I simply had never had my faith challenged in that way. We wrapped up the conversation with her saying to me that she hoped I never had to experience "tough times" and I know she meant that from the bottom of her heart. The ironic thing about this conversation was that I was 8 weeks pregnant at the time, which is exactly when Josiah's heart was being formed.

So now what. Seven months after that conversation Milo and I are about to face the most difficult challenge in our lives and I want to go through it authentically. I don't want to fool myself or anyone else with the way I'm feeling. I want to go through this as real as I can be. Milo and I have talked many nights about how the most comforting thing about our faith is that we fully believe that we serve and love a God that is big enough to handle us being mad at Him or even disliking Him at times. Daylia tells me sometimes "I love you but I just don't like you right now." I'm confident that my God can handle that reaction from me too! I don't right now necessarily take comfort in the fact that God is in control and all this is part of His plan or His will because, while I believe that whole heatedly, God's plan may not be the same as mine. I obviously want Josiah to come out of this a champion but that may not be what God chooses. I 100% know and believe that God can and I'm begging Him to heal Josiah's heart, but that doesn't mean He will. To me that's reality. That doesn't mean I don't trust God's plan, I do. It just in this moment doesn't bring me comfort. Like I said what brings me comfort is in knowing that in the begining of all this God loves me deeply, in the middle of it He is big enough to handle me being upset with Him or questioning Him (by the way I'm not upset with Him, yet!) and that in the end "God works for the good of those who love him."

"Jesus Draw Me Ever Nearer"
Music by Keith Getty; Words by Margaret Becker

Jesus draw me ever nearer
As I labour through the storm.
You have called me to this passage,
and I'll follow, though I'm worn.

May this journey bring a blessing,
May I rise on wings of faith;
And at the end of my heart's testing,
With Your likeness let me wake.

Jesus guide me through the tempest;
Keep my spirit staid and sure.
When the midnight meets the morning,
Let me love You even more.

Let the treasures of the trial
Form within me as I go -
And at the end of this long passage,
Let me leave them at Your throne.

We had a scare late Sunday night. Erin was having regular contractions that were not going away. They had gotten to be more than 8 times in an hour, which really was not good. Erin tells me that they weren't very strong or painful, but the point was that they were not going away.

We called our doctor's office at about midnight, and they told us to go ahead and check in to the hospital and get checked out. We called our friend Eve who quickly came over to be at our house with the girls, and we went on our way.

Again, we were never really in any fear that Josiah would be born, but maybe we should have been. It became suddenly apparent that we are far from being prepared. Charleston is over 3 hrs away, and if this were really "it," it is possible we would not have been able to get there safely in time.

To make a long story short, they were able to give Erin an IV bag, and some drugs that put her to sleep, and in turn caused the contractions to subside. Tragedy avoided.

The reason we are so concerned, is because Erin is only 33 weeks along. We absolutely need to get Josiah as close to full term as possible, without risking the chance that we can't get to Charleston in time.

We went to the Doctor today, and he put Erin on a drug that is supposed to help keep her from beginning pre-term labor. We hope that this will give us a couple more weeks. Yet, we know that the inevitable is coming.

Will you be in prayer for us?

Josiah smiled for us today and so did we. We met with Dr. Lucas this morning (our pediatric cardiologist here in Greenville). Our oppointment, for the first time in a while, gave us an oppertunity to get some good news. Dr. Lucas looked at Josiah's heart and said that he was more encouraged than he was expecting to be. He was specifically looking at the blood flow between the left and right atriums and making sure that the opening between the two atriums had not closed any more. He doesn't think that there has been any change since the defect was found at MUSC. He also thinks he found a "new vessel" leaving the left atrium and attaching to the superior vena cava. I had to ask Dr. Lucas to stop at that point and explain what he meant by a "new vessel." He went on to tell us that in rare cases it has been found that the heart can create different pathways for blood to flow. He explained to us that it was a possibility that when Josiah's heart found that blood could not properly flow from left to right atrium that it could have created a new vessel for blood to leave the left atrium. CRAZY! What this means for us is that if what Dr. Lucas found, is in fact there, we don't have to worry as much about the opening between the atrium closeing in utero because blood has another option for leaving the atrium. So it reduces the chances that they would have to deliver him prematurly, making his chances of survial greater. As any good doctor would do, when Dr. Lucas saw the smile on my face he made sure to remind us that despite this new finding our little boy would still be born critically ill. He will still have to be taken immediatly after birth to have the catheritization done to open the hole between atriums. At that moment though, it was great to hear some positive news rather than more neative news and so the smile remaind on my face. I can't believe what a complex and amazing thing the human heart is and to me it points directly to a even more complex and amazing creator.

We are looking for a place to live in Charleston while we are at MUSC. Milo and I are very confident that the Lord will provide something for us and that will all be worked out. I'm writing about our need because I figure the more people that know what we need, the more likely it is that someone knows someone who knows something about a place to live somewhere in Charleston. What we are specifically looking for is a 2-3 bedroom apartment as close to, if not in downtown Charleston. I really don't want to be too far away from the hospital. We will be coming down there with our two girls and my parents who will be watching the girls while we are at the hospital. The hardest thing to set in stone is the dates we are going to need a place. The doctors tell us to expect to be there anywhere from a month to two months. Originally, they were talking like they would wait until I was 39 weeks to deliver, which is the last week of May. However, with the newer complications we've had it would be quite an accomplishment to make it that long. Hopefully, we won't be needing anything until the middle of May but it seems to be so up in the air. Again, Milo and I know and believe wholeheartedly, that the Lord will provide our needs. Who knows who He will use to do that... I actually am excited to find out!

Things have been quiet for a week or so which is a blessing. I had my weekly doctors appointment on Wednesday and for the first time in months nothing had changed in our situation. That was nice. Two weeks ago we found out that I have more amniotic fluid than I'm suppose to. Dr. Greig doesn't know why. It's not too huge of a concern but the result could mean me going into pre-term labor, which is bad for Josiah. This weeks appointment showed no change in the amniotic fluid levels, which was good.

So again, the immediate things we are praying for... the atrial septal wall in Josiah's heart not to close any more than it is, me not to go into labor early, and for a place to stay in Charleston while we're there. Thanks so much for praying with us.

As part of our visit to MUSC this weekend we had another echocardiogram done to check Josiah's heart. When people asked us how they could specifically pray for us this weekend we asked them to pray that Josiah would be still during the echo so that the doctors could get great pictures of the heart and make their best assessments. We asked this because during the previous echos that we have had done Josiah seemed to think it was time to show off his swimming skills and the doctors weren't able to get the best read on his heart. On Friday, as soon as the first image of the heart came up on the screen the technician said, "Wow, this is a beautiful picture of the heart. Baby is being so photogenic today." She kept remarking through out the whole echo about how still he was being and what great pictures she was getting. She even said that they would be using these pictures to teach from later this week. Milo just kept squeezing my hand every time she made a comment about our "photogenic baby". All that was so encouraging to us. It was a very clear answer to prayer.

Milo and I do believe with all our heart in the power of prayer. That's half the reason I write this blog... so that more people can know our situation and pray on behalf of us. It is a great honor and so very humbling to know the great amount of people that have been praying for us already. So here is our most urgent request...

The hole that is in Josiah's heart, between the left and right atriums which is now getting smaller, must remain open. If it closes the doctors will have to deliver him immediately and with Josiah's other heart problems that would not be good at all. Along with that, as the hole gets smaller blood does not circulate properly from the lungs back to the heart, which may cause the lungs not to develop properly. Again, not good for HLHS babies. So please pray specifically for the wall between the atriums to remain open and even miraculously reopen further and two, for the strong development of Josiah's lungs. He needs to be as healthy and as strong as possible to survive the the first stage of the HLHS surgeries. Thank you for praying with us we know it will make a difference.

We went to MUSC in Charleston on Friday...

Our goal for this visit was to familiarize ourselves with the surgeons there, do an in-depth echocardiogram, (which is a very high quality ultrasound), and visit the Ronald McDonald House.

The physicians are incredible, and the staff was very good to us. We really feel good about our decision to go to MUSC. However, we ended up getting more bad news when the echocardiogram was broken down for us.

What we were told. His current condition is hypoplastic left heart syndrome, HLHS, which means the left ventricle is underdeveloped, or in Josiah's case nearly non-existent. Over the last few weeks, we learned that through a series of 3 surgeries he is heart would be re-plumbed to work off of 2 chambers. Though still very difficult and complicated, these surgeries are becoming quite successful and compared to a 100% fatality rate for HLHS cases 20 years ago, MUSC has a success rate of 90% or better. This is where we were at before Friday morning.

Friday, the doctors were able to determine that an Atrial Septal Defect is also a problem Josiah will have to battle. ASD in many cases is a hole between the 2 upper chambers of the heart that doesn't close properly after birth. In our case the same condition is referring to the hole closing in utero. Because of this blood is restrained from flowing between the dividing wall between the two upper heart chambers while in the womb. With this, blood flowing through the lungs (which have no oxygen in them yet until birth) is getting backed up. This fluid in the lungs, while already a serious problem with any child, presents some very difficult complications with a child like Josiah with a HLHS heart.

What does this mean? Josiah will need to undergo a catheterization immediately after birth to repair the ASD. Then, he will need to heal and recover from this procedure before the 1st operation for the HLHS repair can be done. Also, before, we were told to try to go as late as we could so that Josiah can grow as large as possible. Now, we need to monitor very closely how much fluid is building up in his lungs. If this reaches a dangerous level, Erin will undergo a C-section immmediatly, and he would be taken out to undergo the cathererization. The HLHS scenario is a 90% -95% success rate. HLHS with ASD is at a 48%-58% success rate. If he were to be premature, the stats get considerably worse.

What do we do? I don't know. We are praying. We are talking to close friends and family. We are "dealing" with things. However, this is like a bad movie we saw on TV once. This doesn't feel like it can really be happening to us. It doesn't feel like reality. As we are beginning to free fall, we find ourselves grasping for Biblical truths that we intellectually know to be true, but are too emotionally numb to feel.

Sometimes God uses other means to speak to us. On Sunday,(tomorrow) I will be leading a new worship song entitled: Amazing God, by Brenton Brown. After learning all of this, the chorus of this song, and it's referral to the heart, has a whole new meaning to me:

You're amazing God, You're amazing God
You can bear the weight of every heavy heart
You can heal the pain, you can clean the stain
You can turn our tears into songs of praise
You're amazing God


Thank you God.

I feel like I need to clarify where I said in a post earlier that the greatest feeling I was having was loneliness. I don't for a second want anyone to think that we are lonely in regards to not having support. We have the greatest families in the world who love us, support us, and will be there for us through all of this. That goes for my family, Milo's family, and our "church" family ( I put that in quotes because I don't just mean our current church family). Our parents have been there for us from the beginning doing what they can to help relieve stress for us. My mom has cooked us meals, watched the girls so that I can work and has moped my floor every Tuesday since she found out the news. Milo's mom has been there to babysit for us when we've had doctors appointments. Our church families our amazing. I have gotten at least 2-3 cards a week from a former church with handwritten notes telling us that we have been prayed for. I am so grateful and feel so blessed by the people in our life. We could not and do not want to go though this with out them.

All that said, the loneliness I wrote about earlier is, I think, just an inevitable feeling at this point.

1.) Josiah's heart has a major defect where the left side of the heart did not form correctly.


2.) I will be induced around the last week of May and deliver at the Medical University of South Carolina (MUSC) in Charleston (about 4 hrs. away)


3.) MUSC is one of the top children's hospitals in the nation and one of the top in the world for cardiothoracic surgery. We are very lucky to have one so close.


4.) MUSC is on of the few hospitals with a pediatric cardiology intensive care unit (PCICU)- which is one of the main reasons for their high success rates. I'm very comforted by the fact that every nurse and doctor that he sees will be specifically trained in pediatric cardiology.


5.)We'll live in Charleston with the girls and my mom and dad for 1-2 months after Josiah is born.


6.) I will be able to deliver naturally (if all goes well).


7.) They will take Josiah immediately after being born to the PCICU- which means most likely I will not have the chance to hold my new baby- so far that's one of the hardest things for me to deal with.


8.) They will give him a drug that will keep the hole in his heart, that naturally closes at birth, open. This will allow blood to still flow freely and keep him stable until surgery.


9.) The first surgery will be sometime in the first 1-2 weeks depending on how well he is doing.


10.) I will hopefully still be able to nurse Josiah. Although that won't actually happen until after he has recovered from his surgery (several weeks). I will pump in the mean time. I'm really praying that works!