broken world = broken lives

Some of you may know the events of the last week and a half in our lives. It has been a painful rollercoaster, and there is no immediate end in sight.

The truths that we are clinging to:
God IS good
He loves us
He loves Jude
He is hurting with us right now
He is the great physician
He never planned for this to happen, it is the consequence of living in a broken world
There is nothing we could have done to avoid our situation (no guilt allowed)
There is happiness and life for our family beyond this time of pain
God has a plan to use this for His glory

We have been so blessed by our dear family, friends, and church family. We literally could not have made it through this hellish time without the prayers that have been sent up for us. There have been and will continue to be many tears and much sorrow, but our ability to get through the last few days can only be attributed to your prayers and we are deeply grateful.

For those that don't know our situation:
Last week we had our routine anatomy scan for Jude. We scheduled it on my birthday (11/08) thinking that it would be a fun time of enjoying our beautiful baby boy. Throughout the ultrasound the tech was very quiet, and simply stated that she was concerned about his growth. At that point we only knew that he was lagging in growth, and that his abdominal circumference was VERY behind. But we were trusting that Jude was ok, and just growing at his own pace. It was a restless week between appointments, but I was feeling him move a kick constantly, and Jess even felt him move for the first time, so we were able to cling to some peace.
Tuesday (11/15) we saw the perinatologist (mom-baby complications specialist). On the ultrasound at that visit they clearly saw that Jude has at least 3 clubbed and contractured limbs, he's lagging even furthur in growth (less than the 3rd percentile), has an underdeveloped lower jaw bone, and what appears to be an enlarged and 2-3 chambered heart. In short, his tiny little body is very very broken. Our very kind doctor sat us down at that point and explained the most likely diagnoses. Top on the list is a Chromosomal disorder, and most likely of those is Trisomy 13 or 18. Both of these are fatal disorders. Next on the list is a rare genetic disorder called Arthrogryposis. Children with Arthrogryposis can live, but have a short lifespan full of surgeries, wheelchairs, and much physical pain. The doctor soon mentioned the possibility of terminating the pregnancy, which we simply said is not an option, and that anytime we get with our little guy is a blessing, even if we never meet face to face. The words came out of our mouths easily, but the full implications had not hit us yet, and small realizations of impossible hopes and dreams will continue to gut-punch us over the next few weeks and months.
Yesterday (11/17) I had an amniocentesis. At first we struggled with whether or not this was the best decision for Jude because of the significant risk for pre-term labor and miscarriage. It is difficult to make big decisions with a clear mind when your entire world was just flipped upside-down. Our doctor explained that having a more clear idea of what is causing Jude's body to break would help make important decisions in the future about whether or not they need to be prepared to treat him after birth, or if it would just be inflicting unnecessary pain on him. It will also determine where I deliver. If his condition offers some hope for survival they will have me deliver at The Children's Hospital in Denver. This is something that University Hospital and Children's Hospital occasionally make special arrangements for in order to rush a baby immediately to surgery and give them the best chances possible.
The amnio went fine. It's not a pleasant procedure by any means (they enter the uterus with an aspiration needle through the abdominal wall to retrieve amniotic fluid to test), especially as they don't use any anesthetic, but the knowledge of what they are doing and the risk that it carries is much worse that the procedure itself. If in two weeks I haven't gone into pre-term labor, then the risks from the amnio will be past. We should get some preliminary results for the more common chromosomal abnormalities (relatively speaking) by Sat (11/19) or Sun (11/20). The complete results for other even more rare chromosomal abnormalities will come back in about 10 days, so next weekend.

At this point Jess and I are resigning ourselves to the idea that if we do have time with Jude after his birth, it will be very short and it is highly unlikely that we will ever be able to bring him home. It is easier for us to believe that he will be home with Jesus before he can come home with us, simply because it would be much too painful to continue accumulating baby stuff and prepare for a homecoming on such a small chance of it happening. We do believe in a Healer God, however hanging on to hope for a future with Jude right now would make coping with our reality simply impossible.

The people in our lives have rallied around us and supported us beyond what we could have imagined. Though feeling so loved brings out tears, it does help enormously. There is an army praying for us, and we truly believe that those prayers are what has carried us through the last few tumultuous days, and they are the only thing that will carry us through the coming weeks, months, and years. Some specific prayer requests you can lift up for us are:

- For Jess as he is back in school and seeing people that know about the pregnancy, but not our current circumstances.
- For Jess as he is studying in the following days and weeks, that he will be able to concentrate and continue to be successful at school.
- That Jess' professors will offer him grace in his work as we continue to struggle through the following months.
- For me as I go back to work next week, that God would guide me to be gracious in explaining our new story (especially for interactions with the other pregnant girl at work, who I've talked "pregnancy talk" with.)
- That my boss would be understanding of some limitations I may have in my regular tasks, and help reassign some of my more difficult clients.
- That I would be able to have an extra measure of grace and compassion on the families that I work with and their children. And that the difficult family situations I work with would not trigger emotions of anger, jealousy, or sorrow.
- That our doctors would continue to show great compassion and have supernatural wisdom about our situation. That they would be able to give us "enough" information to make decisions but not too much to swallow. Also that they would help us tread the fine line of being parents but also sometimes having too much knowledge from being healthcare professionals.
- That we would somehow be able to continue to enjoy this time of pregnancy and carrying Jude. That I would feel love and joy instead of sorrow when I feel him move and kick.
- That God would give us guidance in how to manage the next four months of pregnancy and "having" Jude in our lives, while knowing what is on the horizon for us all as a family.
- That Jess and I would be able to continue to love and support each other as needed through this difficult time.
- Prayer for our emotional and mental health in the future as we cope with a difficult and confusing situation.
- Thanksgiving that God has provided us with such an amazing support system. Thanksgiving for the Body of Christ in action.
- Thanksgiving for our immediate families and their understanding and love. Thanksgiving that my mom was able to come be with us this week.
- Thanksgiving for the time that we DO have with Jude; no matter how short or long it is.
- Thanksgiving for the strong marriage that God has blessed us with, and our ability so far to support each other just as we each have needed.
- Thanksgiving that we have relationships with a God that loves us and wants good for us.
- Thanksgiving for the knowledge that God WILL use this for good, and that our pain will not be fruitless.

I could go on for miles with prayer requests, but these are some that are at the front of my mind right now. God knows what we need, and will grant us with the strength to take each day as it comes.

Thanks for reading and supporting us in prayer. There are a few things that we would like to ask of you in the coming days. These requests may change as time goes on and we will update you as they do, but for right now this is how you can best support us:
We crave your prayers, and the knowledge that you are praying. We would love to hear from you that we are in your thoughts, but NOT in a public forum. Private Facebook messages of encouragement are welcome and helpful, but PLEASE nothing on our public walls. As we begin to re-enter our "real lives" and interact with you all, we can speak about our situation with you in private arenas, we will accept hugs and words of encouragement, but please only in private. Our emotions are too raw to interact this way with others around. We can't handle any extra emotion triggers in public. We love our church family dearly, but when we come back to church again is a few weeks, please, as best you can, go about "business as usual." It may sound strange but it is too emotionally charged to be loved on in public. We believe that at this time we will be able to cope best if people pray and love on us in one-on-one private situations only so that we are not constant blubbering messes in front of large groups of people. As odd as it may sound, especially as I continue to look more and more pregnant, you can support us best by ignoring my pregnant state in public. Again, in private, you are welcome to be more personal, however around others we can't emotionally stay strong with frequent comments about my pregnancy.

We love you all and know that we are loved in return. Thank-you for reading this, sorry it's so long but the writing of it has been therapeutic for me. Please continue to pray for us, as we have a very long road ahead.

Thank you again for your support and sensitivity to our requests.

Jenn