Dear Husband,

I would look REALLY good carrying this bag. I know it is expensive, but we could call it an investment.

Where do I start?

It's been so long since I've blogged that I can't quite figure out where to start but am feeling the need to blog. Since I've never really shared my blog with friends and know that only a handful of people read it occasionally, I haven't been very motivated to keep it up. At times like this though, it is so good for me to think in terms of blogs. It sort of helps me to organize my thoughts and feelings in a specific way that is good for me I think. So, if you are reading this I'm sorry for the long absence an I hope that you will forgive me if I jump back in and write from time to time.

In order to maintain some sense of linear thought in this blog I will assign this post to the task of a quick update on things that are not meant to be trivialized, but will be summarized for the purpose of this post.

I last blogged about infertility and the emotional journey that this caused. We did our first IUI in October and became pregnant! I guess this almost never happens and the doctor's were thrilled with the success. I could designate whole blogs on how we told our families, and how unbelievably pinch myself thrilled we were to finally be pregnant. Husband often called it the countdown. We wondered for years when we would finally become pregnant and all of a sudden with one phone call from the doctor the countdown had begun! July 19th we were due. It couldn't come soon enough but I decided not to wish the time away but to enjoy every little thing about pregnancy. I bought maternity clothes was earlier than necessary, lifted nothing heavier than 10 lbs, stopped drinking caffeine completely, and all of the things that you are supposed to do without thought of sacrifice. I would love to say that no one on earth was ever more thrilled to be pregnant than we were but I'm positive that many others feel the way that we did.

We had complications in the first week of finding out that we were pregnant, but after that it was smooth sailing. We found out fairly quickly - at about 12 weeks - that we were likely having a boy. At our 18 week doctor's appointment that was confirmed and we began to plan for our son in a more specific way. His name is Cole Elijah and I will conclude this post by attaching emails that I wrote to family and friends about him.

February 23rd:

Brian and I received devastating news Friday about our baby. Let me first say that I apologize for sending this out to you via email instead of in person but we are just not ready to have conversations about this at this point. We got a call on Thursday night from our doctor that some "serious concerns" were raised from our Anatomy Scan ultra sound that we had on Monday. They rushed us into a specialist on Friday and things are much worse than we originally feared. The baby has something called Skeletal Dysplasia which is 100% fatal and there is no question as to the diagnosis.

The most likely scenario is that the pregnancy will continue to full term as my body will keep him alive until then. Most likely he will be born and die shortly after birth, unable to breathe on his own. This is a very rare diagnosis and is not genetic or chromosomal. According to the specialist this just "happens." They call it a "sporadic" condition meaning it sort of happens at random. This is really all that we know at this point. We are being sent to Cedars Sinai hopefully this week to meet with a team of doctors (the best in the world) who specialize in Skeletal Dysplasia. This is not to confirm the diagnosis because that has already been confirmed (3 doctors have confirmed this.) There are several forms of this dysplasia and they hope to narrow it down so that we can tell more precisely what we are looking at so they know how to treat me and the baby as we prepare for his birth. Ultimately we will know if we are looking at minutes, hours, or weeks of life for him. Sadly we are praying for - and our likely best case scenario is that his life is short so that he does not suffer.

Please pray for us. We went from Monday where we learned he was a boy, and a very active little guy at that - to Friday where we learned that our dreams of raising our son were shattered. We don't know how to process this mentally, emotionally, spiritually, or even how to go on with life with this news. Please pray.

We wanted to email just a few close friends and family and feel badly for sharing such bad news. We aren't ready to inform everyone, and frankly we don't have the energy to do so, but we wanted to let those of you know that have been so close to us on our journey. We will keep you posted as we learn more. Brian's grandma died this weekend as well so there is much to be done in the week ahead and we will keep you informed as we have news to share.

Thank you for your support and prayers. If you live in town forgive us if we sort of hibernate for a while trying to wrap our brains and hearts around all of this.

March 6th:

Some of you have received various updates so forgive me if some of this information is redundant but we have received lots of questions about our visit to Cedars Sinai so I thought I would send a quick update.

Our visit to Cedars Sinai was very informative. We met with the only doctor in the Skeletal Dysplasia Research Center through Cedars Sinai who specializes in pre-natal diagnosis of SD. She was able to quickly tell that our son has something called "Cornelia de Lange." There are over 380 types of skeletal dysplasia disorders and we knew from the previous diagnosis with the team of perinatologists that we were not looking at Dwarfism or any of the other types of normal-abnormalities like many of you had mentioned in your emails to us. Dr. Krakow confirmed this very quickly (she was part of the research team that originally identified the gene that is "cornelia de lange" so she is intimately familiar with this particular dysplasia and knew right what to look for) and informed us that not only was our son missing arms, and his bones were too small keeping his organs from developing, but that his skull was VERY small and his brain was unable to develop. Even the mildest cases of Cornelia de Lange cause moderate to profound retardation and ours is not a mild form. In her words, if our son were to survive outside the womb - "a child with down syndrome would be a rocket scientist compared to him" in regards to cognitive abilities. She went on to say that if he survives birth he would never know who we are, have the ability to speak, or be cognitively aware of his surroundings. They can't say how long he will live - inside my womb or out. Our prayer is that the Lord will take him home and make him whole so that he never has to struggle outside the womb.

Friday we met again with a geneticist and the original perinatologist that gave us the diagnosis and both confirmed their original theory that this condition was "sporadic" meaning that any genetic mutation likely started with him and would only become "hereditary" if our son reproduced - which obviously he will not therefore it is genetic, and not hereditary. Basically what this means that at a very high end, worst case scenario, we would have a 1 ½% chance of this ever happening again. Essentially, they are saying that this happens at random and has nothing to do with Brian and I, and simply has to do with this baby not forming correctly. Although this is good news for future children, it doesn't change our current situation.

As far as how we are doing... it changes day by day. As much as we desperately want him to be with us as long as possible, we saw the photos in 4 D ultrasound at Cedars Sinai and it is horrifying to think that our precious son be held captive in a body that is already so malformed and so clearly not whole. I selfishly want him with me as long as I can and yet desperately long for him to be made whole, even if that means in heaven. I can't bear the thought of watching him suffer. I long to hold him in my arms while he is still alive so that I can pour all of my love into him even if just for a moment and at the same time I pray for God's mercy that he would never have to know life outside the womb and never have to struggle for breath or life. The hardest part for me to understand is why the Lord would choose to answer our prayer for a child only to take him away from us. I am mad about his room that will be left unfinished and my baby shower that was half planned, and my stroller, and crib and bedding that I had made such big plans for, and all of the other little things that I had picked out for him, and yet I don't care about any of that! I just want my son to be whole!!! I do take comfort in knowing that one way or the other the Lord will make him whole, either miraculously on earth, or by taking him to heaven. We are grieving, we are angry, and we don't understand, and we are telling the Lord all of that. I don't pretend to see His hand in all of this, but I know that He has never felt closer and I can feel Him walking this with us. We have been so blessed by all of the amazing people in our lives who have brought flowers, left text and voice mail messages, sent cards and emails, taken us out to dinner, prayed for us, and reminded us that we are not alone through all of this. Our arms are empty but our hearts are full.

We will keep you posted as we learn more. Right now what we know that our son is not meant for this world. We know that in any scenario outside of the Lord choosing to heal him, he will not be with us much longer. We are praying that God will mercifully take him home without suffering.

March 11th:

Many of you know that our son was given a fatal diagnosis just a few weeks ago. Sadly, this update is to let you know that our son Cole Elijah went home to be with the Lord. At a doctor's appointment on Monday we learned that he was no longer ours and we "had" him on Tuesday.

It goes without saying that these have been an excruciating couple of days for us, but we find such peace in knowing that he is now whole and will never have to struggle for life here on earth. We are also thrilled that Cedars Sinai is using his little body for research and hope to learn something about Cornelia de Lange that will help other families. We are also thankful that the Lord provided both of our families to be close to us during this time. My parents moved here just a few months ago - hoping to be close to their grandbaby, but what a blessing that they have been so close during this time. Brian's parents happened to be home from Fiji because of the death of his grandmother. It is such a blessing to be close to family during this time as we are all grieving together.

I am going to be off of work for several weeks and Brian and I hope to go away in a couple of weeks to spend time together after I recuperate a bit from his birth. We have made arrangements with a local mortuary to cremate him (after we get him back from Cedars Sinai) and hope to have a family service before Brian's parent's have to go back to Fiji.

Thank you for your prayers and your thoughtful concern over the last few weeks. Please continue to pray for us as we adjust to this new reality. We are so thankful that Cole has been made whole, but our hearts are broken. We feel empty - to no longer carry him in my womb, and not get to carry him in our arms is devastating. We are angry that the one thing we have begged God for He has denied us. We can't pretend to see His hand, but we are desperately clinging to Him because we know He is the only way through this kind of hurt and pain.

Follistim

Last night I gave myself my 7th shot of Follistim on our first (and hopefully only :-) IUI cycle. We started doing shots every night (150 each until last night which we lowered to 125), and ultra sounds and blood work every other day last Tuesday, October 14th. As of today I have 5 measurable follicles (around "17") which the doctor seems to think is great. I don't know what to think or feel. I love how optimistic he is and since this is our first IUI I don't have anything to compare it to. Since he seems pleased, I desperately want to be hopeful and at the same time I can't bear the thought of being disappointed yet again! He told me on Sunday that they hope to see 2-4 follicles by the time they trigger ovulation and as of today I have 5!!! And I'm still at least two days away from our trigger shot! I feel concerned about multiples (5 babies is a lot of babies! The potential complications scare me worse than the thought of raising 5 kids scares me!) because I am completely opposed to "reduction." However, I want to take whatever the Lord will give me! If the doctor thinks that 5 is fine, then I think 5 is fine. For all I know it takes 5 follies to make one baby and that's OK by me :-) The worst part is waiting. I am so hopeful that this will work and so anxious at the same time. Lord, please give me patience and peace. I so desperately need it!

Elephant

Last night Brian and I had a conversation about our most recent awkward experience at church. As usual worship was very emotional for me as I struggled to offer the "sacrifice of praise" that I mentioned in an earlier post. As soon as I opened my bulletin I wished I had chosen to stay home. The sermon was titled "The Reality of Suffering." It was encouraging and frustrating in equal measures. I can't help but feel like people tell you to "give it to God" as if to imply that if I had given it to God my circumstances would change or I would feel completely at peace about our situation. I have given it to God, hundreds and hundreds and hundreds of times...but I'm still in the suffering. I feel God's love pour out on me as I surrender this to him like a salve on an open wound. But none the less, the wound is still open. Giving it to Him does not mean that I won't be broken or isolated, it simply allows me to keep this in perspective and allow myself to be loved on by him in the process.

I find myself when I'm at church wishing I could blend in with the pew, hoping no one will notice me in my suffering. The last thing I want is any attention when I feel at my most vulnerable. I found myself turning my friend away as she tried to reach out to me during church, simply because I didn't want any undo attention on our situation. I certainly know that the world does not revolve around me, but in the middle of that service as I was hearing about suffering I felt so conspicuous - as if everyone around me was keenly aware of my presence and my pain. The moment church was out I ran to the car, leaving Brian alone to have the awkward conversations about "how we're doing" with all of our pregnant friends.

It was as I was sitting in the car praying that no one would notice me that I was able to pinpoint the exact source of the awkwardness that happens when I am around pregnant people. I feel like I am the elephant in the room. I feel SO exposed and conspicuous and vulnerable. I feel like my open wound is exposed for all who are around to inspect and try to fix. I have friends with whom I am very vulnerable about this situation...but I am vulnerable on my terms. Being around pregnant people makes me feel vulnerable on their terms. I feel like I am the thing that everyone is thinking about and keenly aware of - but afraid to address.

Lord help me to remain vulnerable to you and teach me how to be a graceful elephant.

Still in the Wrestling

Over the past few days I have been pondering the story in Genesis chapter 32 about Jacob wrestling with the man who many scholars believe was God himself. Jacob tells him "I'm not letting you go until you bless me." Something about that rings so true with me right now. We have prayed endlessly for God to bless us with children. We see a baby as a blessing from God and have been praying for that blessing. I feel so drawn towards Jacob's courage, endurance, and faith. I am still in the wrestling. I am still enduring and trying to remain courageous and have faith while wrestling with God. I feel inspired to be determined. I am determined not to let go until He blesses me. I know that wrestling with God results in scars (like Jacob's hip) and I am willing to bear them if it means God's blessing. I feel inspired to plant my feet and wait for the blessing.

My Husband

So, in the last few days I have been overwhelmed with the feelings that well up in me as I think about my husband. I prayed for him for so many years, and during this season I am SO thankful that God sent me him to me. I can't imagine walking this journey with anyone else. He is so sensitive and so loving. He is the best companion I could have ever imagined. I LOVE HIM!

He holds me every time I cry, he pokes fun at me and keeps me from taking myself too seriously. He buys me flowers (and remembers that hydrangeas and peonies are my favorites!) he plans surprise weekend getaways, he runs interference so that I don't have to face uncomfortable conversations, he loves me.

I adore him and have never had reason to doubt his love for me...but never have I imagined a love like he has shown me in the past two years, and the past six months specifically.

I am blessed!

Things to be thankful for

I complain about everything. I hate hearing the words come out of my mouth, and I hate that I have these thoughts, but I haven't seemed to be able to stop myself. I decided today that I need to make a "thankful" list instead of constantly giving God my "complain" list.
Here goes...

I am thankful for:

My husband!!!
My dog.
My beautiful home
That my parents moved to Orange County
That both of my siblings are close by
That I have a good job
That Brian has a good job
That Meguiars did not "go under" during this financial crisis
That Vanguard has not "gone under" during our financial crisis
That we can afford to drive two cars
That we only have to pay 50% of these medical expenses because Vanguard changed insurance companies at the last minute - under our old insurance we would have paid %100!
That we serve a God who loves us
That His plans for us are bigger than ours for ourselves
That He will do "exceedingly abundantly beyond all we could ever ask or imagine!"

Hope Deferred

Journal entry - April 11th, 2008

Proverbs 13:12
"Hope deferred makes the heart sick, but a longing fulfilled is a tree of life."

Lord, my heart is sick. In this season of hope deferred I am unable to feel whole. Somehow even my arms feel empty. Every month I grieve. I grieve the loss of hope. I grieve for my empty arms and ailing heart. I pray that in this season of hope deferred you will grant me wisdom and faith. Use this time to teach me how to be a good, healthy, godly mother. Teach me how to love my husband more. Teach me to look more like you. I pray that at the end of this, and Lord, I am desperate for the end of this, I will be better prepared for the next season - the tree of life season. Forgive me for self pity and pride and anger. Grow in me selflessness, humility, and patience. I NEED YOU!

Specialist Part 2

So we saw the specialist today and I haven't quite been able to label how I think and feel about this path we have begun.

Our appointment went like this:

*Meeting with doctor in his office - talked about medical history and history of trying to conceive. Discussed medical records.
*Doctor tells us he feels confident that we will conceive, it is just a question of which procedure will work for us.
*Doctor tells Brian that he has to have one more sperm test.
*Doctor tells us we will start a round of IUI in October at the start of my next cycle.
*Yucky physical exam where once again everything looks "normal."

We left feeling hopeful and I think a bit exhilarated at the prospect of what is to come. I think I expected to be bogged down with another round of tests and procedures, but did not realize that we would literally jump right in to fertility treatments. The doctor made it sound so simple and easy and he felt so confident which I think led to our hopefulness. The doctor's office is filled with "success" stories and dozens and dozens of pictures of "success babies" and that left us feeling very hopeful.

By the time I got home however, my mind started spinning with all of the information we had been given:

*They don't know what is wrong with us.
*Therefore they don't know if this will work.
*These procedures are VERY expensive.
*We only have a 15% chance of success with each IUI.
*If we do conceive, we have a 25% chance of multiples.
*If we don't conceive, I will very likely have exploratory surgery.
*Depending on what they find in surgery, in vitro might be our only option.
*Because of my age (33) we only have a 40-45% chance of success with in vitro.

I am left with conflicted feelings. We have no reason to think this won't work. The doctor feels confident so we should too. On the other hand, this will be a HUGE financial burden (worth every penny) with statistically small success rates. This is our last chance. This has to work.

We prayed last night and our continued prayer will be that God will do a miracle and help us to conceive naturally this cycle and spare us from these procedures. We trust however that if the Lord chooses not to answer this prayer, He can provide for us financially as we seek these other avenues of hope. We know that a child is a miracle no matter how they are conceived.