Long Week and a Few Updates

This week was incredibly long. I wanted to write this post to update last night, but I am pretty sure I feel asleep somwhere around 7:30. Between several appointments, Back-to-School Nights, and work, Spencer and I are both exhausted.

I finally was able to talk to the doctor from CHOP yesterday afternoon, about 2 hours before our meeting with the hospital staff at Shady Grove. She said what I had been anticipating... that after reviewing the fetal MRI and our most recent ultrasound images, she agreed with the reports from Children's and from our maternal-fetal medicine group. She explained that she believes that this is more than just a giant omphalocele, and that the combination of anomalies that Isaac displays leads her to believe that he has what is called limb-body wall complex (LBWC). This is consistent what the doctor from the maternal-fetal medicine group mentioned on Tuesday. Both of them said that this was in no way a formal diagnosis, but rather their best hypothesis at this time since Isaac displays some, but not all, of the characteristics of LBWC.

We then met with folks at Shady Grove Hospital yesterday afternoon. The chief of neonatology was there, along with a charge NICU nurse, a labor and delivery nurse, and a social worker. We were able to ask more questions, discuss our birth plan, and take a short tour of the maternity ward. The neonatologist doesn't necessarily agree with the LBWC theory, but didn't really disagree either. Basically, she said we need to wait until Isaac is born to really see. She also has a background in genetics, so she will be a great person for us to consult with regarding follow up testing that Spencer and I may need to do to see if we're carriers of something that may put us at risk for something like this again. Clearly, there's still a lot left to find out and determine.

The nurses and social worker were absolutely wonderful and accommodating. Typically, after a c-section, you recover in a sort of triage-like area, with stretchers seperated by curtains. However, there is one private room across from that area that they will reserve for me to recover in and will wheel in a portable EKG machine (since I will need to be monitored after surgery). This way, we can have some alone time with Isaac as soon as possible, as both the doctor from CHOP and the neonatologist are predicting that his time on Earth will last somewhere in the realm of minutes, possibly an hour. Regardless, we're getting the sense it will be very short.

I gave the team the potential dates of my c-section, and the neonatologist recommended doing it on October 16th since it is a Thursday. She said that the pathologist should be able to do an autopsy that Friday. If I had my c-section on the 17th, then that would have to wait until Monday. The date still has yet to be confirmed, though.

They are also reserving an extra-large room in their maternity ward for me. There are two rooms like this, one at the end of each hall. They are also much more spacious, and are a bit more quiet since they're out of the way. We've also been told that we'll have no restrictions on visiting hours or number of visitors so that they can leave those decisions up to us. All in all, I think everyone is on the same page with our birth plan, and I feel very confident in the care that Spencer and I, and sweet little Isaac, will receive.

Please continue to pray for us as mid-October approaches. Spencer and I both feel the burden of this becoming increasingly more heavy, and we are very aware that the hardest part of all this is still ahead of us, despite the long road the past 4 1/2 months have been. I am also becoming increasingly more anxious about my c-section, mostly because of how "complicated" the doctors are saying it is going to be because of Isaac's positioning, the fact that the omphalocele is adhered to me, and how short the umbilical cord is. And then of course, the fact that it is major surgery doesn't thrill me either, seeing as I have never broken a bone or even had stitches.

We also appreciate your prayers for Isaac, that whlie he is with us he wouldn't be in a lot of pain, and that he would just feel so incredibly loved.

Nice Legs!

I don't usually write posts so close together, but wanted to update you all on yesterday's ultrasound.

Everything basically looks the same medically speaking. I didn't expect much to change. Sweet Isaac was hiding his face from us. Both the sonographer and the doctor tried to get us pictures of his face but couldn't. The doctor did get a great 3-D picture of his little legs and feet though...



Isn't that amazing?!

We also learned that Isaac has a head full of LOTS of hair! I was so glad to hear that... I really wanted him to have hair when he was born. It's so neat that they're able to tell those things from an ultrasound picture.

We're still waiting to hear from the doctors at CHOP (Children's Hospital of Philadelphia) and can still use your prayers for all of the things I mentioned in yesterday's post. Thanks :)

Prayers for This Week

Last night I actually made it to the gym. At this point, I am just doing some cardio (Don't worry... at 8 months pregnant, I have finally parted ways for the time being with weight training :) ). While I was on the elliptical last night, I was reading in an issue of People magazine, and came across an article in which the Chapman family was interviewed. For those of you who don't know their story, a few months ago, their daughter, Maria, was killed when she was hit by an SUV, driven by her older brother as he was heading up the driveway. She darted in front of the car, and he didn't see her. Their story is one of great tragedy and sorrow, but also great beauty.

In the article was a quote that Steven Curtis Chapman had said that really stuck with me:

The only thing more frightening than walking through what we're walking through with our faith, would be to walk through it alone, cursing God.

These words spoke volumes to me, as I thought about how frightening all of this is. As the days wear on, the fear, the sorrow, and the grief mounts. Yet, I couldn't even imagine what it would be like to walk through this alone... without our faith in who Jesus is, without the the love and support of our family and friends, and without the hope in knowing that God does redeem all things for good. I thought of Job and all of his turmoil and anguish, how he wrestled with God, and how God blessed him immensely. I almost had one of "those" moments on the elliptical, but figured an 8 month pregnant girl looked ridiculous enough, and that getting teary while beign 8 months pregnant on the elliptical in a packed gym would only look even more strange :)

There are a few things we would love for you to pray for this week.

1- Please continue to pray for a miracle.

2- Today we have an ultrasound at 3:30. I can't wait to see our sweet Isaac. I know he is growing, both my the size of my belly and because his kicks are always being felt in new places (like my bladder!) Please pray that we are able to enjoy that time getting to see him. One only have one more ultrasound (I think) after this one until he is born.

3- Both Spencer and I have our Back-to-School Nights this week. Mine is this evening, from 7-9. I am dreading it... I am dreading the possible questions and the possibility of grief sneaking up on me... I am dreading the pressure in general that this night always seems to bring. Spencer's is on Thursday night. Please pray that God would give us energy to endure these long days.

4- For our meeting with the chief of neonatology and other folks at Shady Grove Hospital (where I will be delivering) on Friday. Please pray that they would be able to answer our questions, that we would feel comfortable with the care that they will be providing for us and our sweet Isaac, and that we're all on the same page with regard to our birth plan.

5- For Spencer and I as we write up our birth plan this week. For wisdom with the decisions we need to make, that we can artiulate our wishes clearly, and that we would be able to make those decisions with the most love and concern possible for Isaac.

6- For continues strength and perseverence. We are both growing pretty weary, and could really use your prayers for this.

If I have time this afternoon, I will update with some ultrasound pictures of our handsome little guy :)

Words of Hope

I was recently talking with someone about this storm that Spencer and I are walking through with Isaac and about how everything feels so chaotic, unstable, and constantly changing. Whether that's my emotions, still becoming accliamated to a new teaching environment, or the state of disarray (at least by my standards) that my house is in, so much of life just feels as though it has completely unravled.

I've talked before about the many contradictions this experience has brought, such as who I know God to be with the circumstances we're currently facing, and that contradiction alone has caused me to really dig deeper into who Jesus really is.

Later in that conversation, I was asked, "What do you know to be true and unchanging? What anchors you right now?" I had a hard time coming up with things that are unchanging... so much has. My faith is changing, my marriage, my hopes and dreams are changing... and though not for the worse, they are still changing.

I was reading a blog this morning that I hadn't looked at in a few weeks. It's the blog of Greg and Nicol Sponberg. Nicol also sang in Selah, and is Todd Smith's sister (and therefore, Angie Smith's sister-in-law). Weeks after Todd and Angie lost their precious Audrey, Greg and Nicol lost their 10 week-old son, Luke, to SIDS.

On their blog, Greg was recalling words that brought him comfort in the wake of Luke's death, and this statement just captured my attention this morning:

There are only two things I know to be true right now... the Cross and the Resurrection.

I can't imagine walking through this not being able to stand on those truths. And though they are few, they change everything. And although it doesn't take away the depth of the sadness and grief, or the times of chaos, it does bring hope to a seemingly bleak and hopeless situation. Because of them, I know where our sweet Isaac will be should he not be here with us.

On Tuesday we have another ultrasound. Would you please pray that it would be a special time for our family... that we would enjoy our time getting to see Isaac, that the doctors would be able to answer any questions that we have, and that God would just grant us peace? As I have said, those times can be bittersweet, particularly as we approach mid-October; but for now, I just want to enjoy the time we do have with our sweet son.

Thank you for your continued prayers, encouragement, and for walking with us.

Yesterday's Appointment

Just wanted to quickly update on yesterday's doctor's appointment. Thankfully, we were able to see the doctor I usually see. She is absolutely wonderful and has been nothing but supportive through this entire process.

Isaac's heart was still beating strong at 153 beats per minute. It took the nurse a while to find his heartbeat, but we knew he was okay because he kept kicking the doppler as she moved it over my stomach. We both got a good chuckle out of that.

It is looking like my c-section will be somewhere between October 15-17. We won't be able to schedule it with the hospital until a month out, so there are still a few more weeks before we know the exact date. In a way, I am glad for that.

My doctor also said that she wanted both herself and another doctor from the practice there for Isaac's delivery since my c-section is looking as if it will be a bit complicated. It was a great comfort to know that she is taking extra precautions in having a second set of well-skilled hands there at Isaac's birth. She is now hopeful that she won't have to do a classical c-section, but said that it still is a real possibility. They won't know until they start the procedure. This is a little better than the news we received on this last time.

I had also asked her what would happen should I go into preterm labor and the on-call doctor was already at the other hospital where they deliver. She assured me that I would be able to deliver at Shady Grove, the hospital where we've been meeting with the neonatologist and other NICU staff. She even went so far as to say that if the on-call doctor couldn't do it, to have them call her, and she would come and do the delivery. I really couldn't be more thankful for how supportive she has been.

Please continue to pray for a miracle for our sweet Isaac, and for a delivery that is as easy and as pain-free as possible for him and that does minimal damage to my body. Please pray that God would calm my nerves about the fact that I will be having major surgery (the thought of having my blood drawn is enough to make me want to pass out!). Please pray for our upcoming appointments next week... our ultrasound on Tuesday and our meeting with the hospital staff next Friday. Please pray for Spencer as he continues to do his best to support me, juggle a crazy work and school schedule, and still tries to have time to do the things he enjoys that keep him calm. Lastly, please pray that God would just be near to us and make His presence known.

Refreshment

This past weekend Spencer and I had the chance to go to Annapolis for a few days. A good friend of Spencer's from college was getting married, so we decided to make a weekend out of it. With school having just started back in full-force, we both were in need of a little refreshment.

Annapolis is one of my favorite towns... for its history, great food, an dreally cute, unique shops. We walked from our hotel to the downtown area on Saturday morning, had breakfast, sat on the pier and talked for a while, and then poked our heads in a few shops. One of the shops we stumbled across was called "Bonjour," a really cute baby boutique. There were all kinds of cute outfits, gifts, stuffed animals, and nursery decorations. It was a bittersweet find. On the one hand, I had really hoped to find a store like this in which we could look for an outfit for Isaac. On the other hand, there were so many things in there I would have loved to have gotten for him. Thankfully, we did find a really sweet outfit for him, and we were able to leave the store just in time before either of us became too sad. Here's what the little guy will be sporting on his birthday...


I loved the shade of baby blue and the fact that it looked hand-made out of really delicate thread. It's cotton... not like a t-shirt cotton... but like a very fine knit cotton. It is so soft, and I love that we'll be able to see his little feet when he has it on.

Spencer and I also enjoyed Nick's wedding. I had never been to a Greek Orthodox wedding before, so it was neat to see all of the customs and traditions. The reception was great, and I think we both enjoyed the opportunity to get dressed up! Here are a few pictures from the reception...




After a really long first week back at school with the students, we were thaknful for the chance to get away and have some time together. And I was glad to be able to take Isaac to Annpolis.

Rain

This morning in my letter to Isaac, I told him how it is raining today. And then I told him that we needed the rain. What I meant was that the plants and the grass needed the rain because they have been having a hard time without it. I think God had a different intention about what He wanted me to hear and to know through those words this morning.

On my way in to work this morning, I thought about the rain... I thought about how wilted and withered things look without it, and about how the rain plays a huge role in allowing the grass, flowers, and trees to be vibrant and full of life.

And then I thought about how our hearts our so much like that.

Sometimes the rains come in a peaceful way... its touch gently affecting everything and bringing it life. In our lives, sometimes the rains are like that... almost cleansing in a way... refreshing.

Other times the rains come in full-force, harsh and chaotic. They can do a lot of destruction. I remember (stupidly) driving home last year in a thunderstorm and having to pull over because I couldn't see what was in front of me. Branches were falling off trees, and I am lucky one didn't go through my windshield. Some storms of life are like that, too... they feel chaotic and seem impossible to navigate. Yet somehow, on the other side, order is restored and beauty revealed.

That's so much where I feel like we are right now. In the midst of heavy rains and harsh winds, things flying at us from every direction, and often not able to see but two inches in front of us.

I think of all sorts of passages in scripture where rains and storms are mentioned... like Noah and the flood, with Jesus and his disciples in the boat when He calms the storm. A passage I was drawn to this morning as I was thinking about all of this has nothing to do with a storm though. It comes from 2 Corinthians 4, verses 7-9 and then 16-18:

7But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. 8We are hard pressed on every side, but not crushed; perplexed, but not in despair; 9persecuted, but not abandoned; struck down, but not destroyed.

16Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 17For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 18So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.

So often I feel hard pressed, perplexed by the contradictions of our circumstances with who I know my Jesus to be, and often struck down by feelings of frustration, sadness, and sometimes even hopelessness. But I know that God doesn't abandon us even in the times we may feel as though he's silent, and I know that even though we may feel struck down, that we are not destroyed.

I don't know that I feel as though our troubles are light; in fact, I feel as though our burden is heavy. But I know that what I can see in front of me is temporary, and that the work that God is doing through Isaac's life and his story is eternal.

What a gift to know that my son is making an impact on eternity.

Truth

I wanted to take a few minutes to address a comment on my previous post saying that I was being judgemental. Please know that was not my intention; our appointment was extremely frustrating, and I hope the following helps to clarify that.

I think it is important to realize that this post was a follow-up to a post from months ago, entitled "The Fourth." In that particular post, I explained that I had had an extensive conversation with this doctor about the issue of termination. Basically, so many doctors had brought up the option with us that I was beginning to wonder if our situation with Isaac was that bad, or if women terminate that easily. And so, I asked him.

In that conversation, the doctor shared that he only knew of 3 women in all of his years of practice that did NOT terminate their pregnancy when given a poor prenatal diagnosis. At that time, I made it very clear to the doctor that termination was not a consideration for us. Period. The only circumstance in which Spencer and I would even consider it is if my health had been in serious jeopardy. It hasn't been. In fact, physically, this pregnancy has been incredibly easy.

Here is what I know to be true, and it comes from Psalm 139:

13 For you created my inmost being;
you knit me together in my mother's womb.

14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.

15 My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,

16 your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.

All of Isaac's days have already been ordained for him. God is the giver of life, and He is the one who takes it away. It isn't up to me to decide. I have been entrusted with my son's sweet little life, as short or as long, as easy or as complicated, as it might be. That is an honor. It doesn't mean that it's easy; it's not. In fact at this point, it is often excruciatingly painful as my c-section looms in the not-too-distant future. But unconditional love isn't easy, is it?

In addition, we have wanted to leave the door open for God to intervene. This is the same God who raised Lazaurs from the dead, gave sight to a blind man, and who restored health to a hemorrhaging woman. He is the God of miracles. He may choose to intervene and heal our sweet Isaac; or He may not. We simply want to leave the door open for Him.

The primary reason that this appointment bothered me so much is because for us, there was no more conversation to be had about the issue of terminating my pregnancy. We had already made our stance perfectly clear, and at 30 weeks, the point is moot. My doctor's job is to provide the best medical care possible, and to be a support for my husband and I (which, most doctors we have seen have been).

I could certainly get into other issues surrounding this topic, but I think that the most important point is clear. I know that being given a poor or fatal diagnosis of your child is excruciating beyond words. I know that trying to figure out how to handle that is extremely difficult. But I also know that God's word is clear, and that it's true.

I hope that this provides a little more clarity to the context of my previous post so that it doesn't sound as judgemental, as that was never my intention.

The Fourth, part 2

If you've been keeping up with this blog for a while, you may remember a post entitled "The Fourth." That post was all about a long conversation I had with one of the doctors in my OB's practice where he was explaining all the reasons why women terminate their pregnancies. When I asked him how many women he had seen NOT terminate a pregnancy when given a poor prenatal diagnosis, he told me three. And I resolved to be the fourth.

Last Wednesday, we had an appointment and the OB I typically see wasn't in. So, we saw him instead. My "regular" prenatal appointments are typically uneventful... just taking my weight, blood pressure, listening to Isaac's heartbeat, and discussing my questions. Isaac's heart was beating strong in the 150's!

At this partiular appointment, I didn't have a lot of questions. Most of the ones that can be answered at this point, have been. We discussed the findings from my most recent ultrasound, in particular the short umbilical cord. I also asked how all of the doctors were going to be made aware of the details of my delivery should I go into labor before the date of my c-section. This is where things turned interesting.

While discussing how to handle this, the doctor wouldn't drop the fact that, "most pregnancies like this wouldn't have gotten this far" and how "the first thing the doctor on call is going to wonder is, 'How is she still pregnant?'" Truthfully, if that's the first thing they're wondering rather than how to get the right medical staff at the right place at the right time so that my delievery is safe and Isaac is well card for, then I am beginning to wonder. Let's just say that :)

Anyhow, he talked about how most women would have already terminated the pregnancy as soon as they found out about the cystic hygroma or the omphalocele(which, I already knew from our previous discussion). He then asked me point blank why we didn't. And I froze. I was caught so off guard and to be honest was a little intimidated by his strong mindset. I didn't give the answer I wanted to... I wanted to tell him about my faith and about how it's God's decision and not ours. Instead, I told him that we simply don't believe that's a viable option unless my health was in serious jeopardy.

He discussed, anonymously of course, other patients he's seen who are alcohol and drug abusers and how he wishes those patients wouln't continue their pregnancies because of the horrible situation in which those children will then be raised. I did press the choice of adoption, and he simply wrote it off by saying that "these women would never give up their babies." There was one consolation in the conversation and that was this: he said that he's talked to many pregnant women who have said, in theory, that they would make this same choice that we've made, but when push comes to shove, they don't. He said that he noticed that we are actually doing what we said we would do. I was glad that he at least noticed that our conviction isn't empty.

In the end, I just felt incredibly persecuted by this doctor... like I was being belittled for my choice and receiving an "I told you so." No one likes an "I told you so," and it is excruciating in this particular context.

I thought a while about what made his reaction so difficult for me, and I think it's this: the outcome could be different. God could, and maybe still might, choose to intervene and make Isaac healthy and whole on this side of heaven. And I can't help but wrestle with the fact there are people, like this doctor, who would be witness to God's work and couldn't help but think more about Him and who He is. Yet right now, I feel like the answer is no.

And so it's tempting to ask the "why" question... Why are You letting this happen? Why are you not choosing to intervene, when all of these people watching would bear witness to it? Why did You choose us to be the ones to bear this cross?

I try not to go there too often, because I may never know.

I've mentioned before that I've found a lot of comfort and strength in corresponding with Angie Smith (whose husband, Todd, sings in Selah) and in reading her blog. Angie and Todd found out when Angie was 20 weeks pregnant that their daughter, Audrey, had several medical conditions that were fetal. She was born in early April, and passed away a few hours after birth.

Recently, Angie wrote this in her blog:

And because I know Who, I am willfully unconcerned with why. I know that God will use this for good, regardless of who may have intended it for evil.

This just spoke to my heart, mostly because of that word willfully. In a situation like this, you can't help but ask why. And I believe that a certain level of that is healthy, because we need to be able to wrestle that out with God. He can take it. But, there's a point where there has to be a conscious, willfull decision to let God be who He is, and to simply trust in His decisions even if we never know why.

So as we continue to press on, we thank you for continuing to walk with us and pray for us. Would you please pray for this doctor, that he would not be so desensitized that he sees these babies as so disposeable? Would you please pray that God would convict his heart of the fact that when he is talking about a fetus, what he is really talking about is a person... designed and created by God?

Thank you for continuing to pray for a miracle for Isaac, for our strength as we go back to work and deal with the added stress of middle school students, and for our hearts as we wrestle out our questions with God, but learn what it means to be willfully unconcerned with why as we seek to just trust in Him.

The Grind

It's been a while since I've posted any real updates, and I have missed sharing with you all here. Spencer and I are both back to the grind now that school has started (for teachers, anyway... kids come back on Tuesday). I am working at a new school, with a new staff, a new curriculum, and a new schedule. Ordinarily, this is something that would excite me; it can be easy to become complacent and it's always good to shake things up a bit once in a while. The fact that my commute was cut in more than half doesn't hurt either.

However, this year, all of these changes are coming at a hard time, and I miss the comfort and familiarity with the school at which I had been working. I miss the ease with which I could work through the curriculum because I knew it well, I miss the depth of relationships with my co-workers... I guess just the security of it all. On Monday night (the eve of going back to work) I didn't sleep well. I literally tossed and turned all night, and woke up feeling sick to my stomach. I don't know if it was the anticipation of meeting a new (and very large) staff, or if was the anxiety of not knowing how I was going to emotionally handle the stress of going back to work. Perhaps it was both.

The folks at my new school have been exceptionally welcoming, friendly, and supportive. I know that it will take some time to become familiar with this school's routines, the new schedule, the new curriculum... and as it was pointed out to me, I need to somehow learn to give myself the grace to simply be just "good enough" right now. That's hard for me because, as the people who know be best would tell you, I can be a total "type A" perfectionist sort of person. "Good enough" was never okay with me. But now it is, because there's a greater thing at stake... a greater thing that needs my time and attention.

And so, we're back to the grind. In all honesty, it is taking its toll. Spencer has less time to golf, which may sound funny, but it has really been a great outlet for him this summer. For me, I already had been feeling like I was in this constant countdown of how many days I had left with Isaac. Now, those days are flying faster and I know I can't get them back. That's been a difficult thing for me, and I am fearful that mid-October is going to be here all too soon.

We could really use your prayers. Would you please pray with us that God would give us the capacity to handle the stress that a new school year and middle schoolers bring? Would you please pray that we would learn to really prioritize in the coming weeks what is non-negotiable at work, and what it is we can let go for the sake of slowing time and enjoying these last 7 or 8 weeks with Isaac? Would you please pray as October continues to draw near, that God would guard our hearts, grant us His peace, and give us the strength to still do a good job a work? And would you continue to please pray with us that He would do a miracle and heal our sweet Isaac?

Thanks for continuing to encourage us and pray for us. We need it, and it means mroe to us than you know.