Sophia Update 11/13/11

Dear Family and Friends,

We just wanted to give a little update on Sophia. This past Thursday we spent the afternoon in Boston, first meeting Mandy's OB at Brigham and Women's hospital (where she'll have a planned C-section if all goes according to schedule). Dr. Oxford was wonderful and “very protective of her patients.” She wowed us with her compassion and strong desire to connect with us. We will see her again Dec. 15.

Then we had a fetal echo and met with Dr. Tworetsky, another pediatric cardiologist at Boston Children's Hospital. He provided encouragement to us when he told us he saw “quite a bit of blood flow” through the left ventricle and out the left aorta. Not only that but the left ventricle appears bigger than originally thought! We have been praying for that exact thing: that God would grow the left ventricle! Dr. Tworetsky went on to say that the right ventricle will shrink a bit after birth and the left ventricle will GROW after birth. More good news!

The news about the ventricle doesn't alter the surgical procedures that Sophia will need to have done at birth and a few months following as of now, but with the doctors telling us that only time will tell at delivery what Sophia's heart will be like combined with the changes in her left ventricle already, we are hopeful for more miracles!

There is a small leakage in Sophia's tricuspid valve on her right ventricle. Due to overworking for the left side this is often the case. The cardiologists will keep a close eye on that in the weeks to come. Please pray that the leakage does not become worse.

Mandy's next appointments are in a couple of weeks for a non-stress test at her OB's office in Westboro. This is a check-up on Sophia to make sure she's not under too much stress in the womb, and is developing appropriately. Mandy will also go in for a routine fetal echo with the cardiologist at Umass Memorial Hospital in Worcester that same week to make sure Sophia's heart is doing okay. Please pray that Sophia doesn't come too early. We want her to stay protected and nurtured in utero for as long as possible!

We will be writing you again in a few weeks come beginning of December to pray for the next round of appointments in Boston. There is a lot on the docket at our 35-week appointment so we'll need LOTS of prayers! Thanks for all your prayers and words of support and encouragement. We couldn't do this alone. We are always grateful for our family and friends.

Much Love,
Doug and Mandy

News about Sophia

So it's been a while since we've blogged and much has happened. With the recent news about our 2nd daughter, Sophia Joy, who will be born in January we realized that it's probably time that we revived the blog so people could keep up with us. So I'll start by posting the emails we've sent out over the past week. They're a bit dated but they are a good summary of Sophia's story so far. Thanks for your thoughts and prayers.
____________________________________________________________________________________

EMAIL #1

Dear family and friends,
First of all allow us to apologize for the mass nature of this email. As you will soon realize, though, we are delivering heavy news, the nature of which makes it difficult to deliver over and over again via phone. Yet we desperately want you all to be in the loop.
As many of you already know, we are expecting the birth of our second daughter, Sophia Joy Priore in mid-January. This past Friday we went to Umass Memorial Hospital in Worcester for a Fetal Echo-Cardiogram. This was necessary because in the regularly scheduled 18-week ultrasound it was discovered that, while the rest of her growth and development is on target, part of Sophia's heart appeared smaller than normal. The echo-cardiogram confirmed this suspicion leaving the doctor to diagnose her with what is called Hypo Plastic Left Heart Syndrome.
Without going into great detail, allow us to explain as much as we understand. A normal heart has four chambers that are divided into two ventricles or sides. One side serves as an intake valve bringing in oxygen enriched blood from the lungs. This blood mixes in the heart with the oxygen depleted blood from the outer extremities of the body and the other ventricle or side of the heart serves to pump the now oxygenated blood back out the brain etc.
It appears that the left side of Sophia's heart is not adequately developed enough to function properly once she is born. She is ok in utero because she gets what she needs from Mandy but once she is born the doctor said she will most likely face three surgeries within the first two years of her life. The doctor told us that termination of the pregnancy was option for us to which we told him that her name is Sophia and no, termination was certainly not an option. So Mandy will be delivering the baby at Brigham and Women's Hospital and Sophia will be taken immediately to Boston Children's Center next door. They will immediately begin monitoring Sophia's heart and the first surgery would take place within the first week of her life.
The surgeries that Sophia faces are common but by no means routine. There are significant risks involved. What they would basically be doing is re-plumbing her heart so that the right ventricle functions on behalf of both sides of her heart. The doctor told us that upon successful completion of the third surgery around the time she is two years old that she can live a relatively normal life. She won't be running any marathons but she hopefully won't be severely limited in her activity either. A lot of this depends of course on the observation and tests they run in the first few hours after she is born.
As you can imagine this news has come as a shock to us. We are aware that we have begun a journey down a long road. We have cried and asked God “why us” and “why Sophia” and all the usual questions that people ask in times of great grief. However, in all of this we have clung to the words of David in Psalm 139 when he assures us that Sophia was “fearfully and wonderfully made” when she was “knit together” in her mother's womb. We hope that you will join your hearts with ours in prayers for strength, healthy development for Sophia, and miracles. We hope that you will all continue to love and support us with your presence in our lives as you always have in the past. Above all we hope that you hear us say loud and clear in the midst of our grief that our God is a great and mighty God, worthy of praise, and able to do the impossible. He can move mountains; He can part rivers; He can walk on water; He can certainly heal Sophia's heart. We love you all and we will do our best to keep in touch during the coming months.
In Faith,
Doug, Mandy, Jordan (and coming soon...Sophia)

EMAIL #2

Dear Family and Friends,
After a long (two plus hour) echo cardiogram at Boston Children's Hospital last Thursday, doctors confirmed that Sophia has Hypo Plastic Left Heart Syndrome (HLHS). We met the cardiologist who will be taking care of Sophia once she is born. We also met the nurse practitioner who will be part of Sophia's care team. They did a wonderful job of reassuring us that “while this is no news any parent wants to hear, we can tell you that this (HLHS) is not new to us.” They stressed over and over how great a place Children's Hospital is and how we couldn't ask for a better hospital. After our conversations with the doctor and the nurse we felt a bit more at ease. We feel peace knowing Sophia's receiving expert care, and have packets and packets of information to prove it:) Now just to wade through it all.....
As of now, Mandy will be dealing with four different doctor's offices. We pray for traveling mercies and stamina to withstand all the appointments. We also pray Sophia's physical development stays on target. By about week 30 of Mandy's pregnancy (middle of November) she will transfer all of her care to Brigham and Women's Hospital where she will be monitored until Sophia's birth. Sophia will receive care at Boston Children's Hospital which is right next door to Brigham and Women's. Please join us in praying for smooth transitions.
We thank you all so much for your prayers, calls, cards, emails, and warm thoughts. We want you to know that we sensed your prayers for us as we sat through this last appointment. We are still praying for a miraculous healing in Sophia's heart. While our life seems overwhelming most days, we continue to put our trust in the One who's in control.

In Him,
Doug, Mandy, Jordan and Sophia

Light

Jordan's favorite word is "dight"or light. She will point out all lights wherever we are, home or away. First thing when she wakes up in the morning or from a nap she wants to turn on all the lights in our house. Her face lights up when she sees light. She will even point out lights in books that I would never have noticed. To say she is obsessed with light is an understatement:-)

We are wired to be in the light. Jordan reminds me everyday to "walk in the light as He is in the light." I can't help but think of Jesus, the Light of the World, when she turns my attention to light. It's such a gift to be geared towards a spiritual truth by my one-year-old. I pray she is forever attracted to the Light.

My birth mother

I have much on my heart tonight. I have lots of mixed emotions. I keep thinking about my birth mother. Jordan is the age at which I would have been joining my new family in Michigan 32 years ago. 15 months. Such a significant time in my life. I look at my daughter nearly every minute of the day and wonder how in the world could I ever separate from her. I couldn't. I don't know how old I was at my time of relinquishment but I do know I had a connection with my birth mother b/c I have had a connection with Jordan since day one. I understand love and God's unconditional love for us with Jordan. I would do anything to protect her, and yes I would give my own life for her. When I hold her I never want to let her go.

The depth of love my birth mother had for me is incomprehensible. I can't even imagine how difficult it must have been to relinquish me to another family. Everyday I can't wait to see what new things Jordan will do and say. Everyday I love her more and more. My hugs are tighter and the bond is much stronger. I can't help but wonder how in the world she could've given me up. I just don't understand and I hopefully never will. I just know it must have been incredibly difficult and painful, something no mother should have to endure. I rest assured she wanted a better life for me-she must have. Her life's circumstances must have been rotten and adoption was the best option, the safest option.

I wonder where she is today. I wish she could meet me and Jordan and my mom. Does she even want to? I wish I could remember more about her. I wish I could see her in my dreams, what we used to do together before the adoption. Did we chase each other around the house like Jordan and I do? Did we sing and dance all day long?

It's taken me almost 33 years to get to this point. I had to have my own daughter to get here, to yearn for my birth mother. Well I do.

Fall Kick-Off (Doug)

So when I took over at my new job I had a very daunting task. I’ve been given the reigns of a very successful ministry on the heels of a person who did the job with excellence. I’ve been training and coming up to speed all summer and the moment of truth is finally here. This weekend Student Ministries at FCCH finally kicks off. Back when I first came on board I got to spend some (far too little) time learning from my predecessor, Suzan, about the ins, outs, and what-have-you’s about ministry here at FCCH. But I still had a good couple of months to go till the time where I would actually be responsible for the teens on a week to week basis.
At the time those months seemed like an eternity. Until this when my sister reminded me of the words of Jed Bartlett who said “Break’s over.” Those words hit me like a ton of bricks. Panic set in and I began to wish for more time to learn, more time to get things ready, more time to plan. But yesterday my friend, Baird, was praying and he said something to the effect of “Thank you God, because you give us exactly the amount of time we need to accomplish what you want us to accomplish.” The reminder of this simple truth blew me away. I love how God speaks to me through other people at exactly the time we need to hear from Him. Kim & Jed are both right, Break’s over.
The day Suzan left I said I felt, in some small way, how Joshua must have felt the day he watched Moses begin his hike up Mt. Nebo. In Deuteronomy 34 we read that when Moses was finished speaking all of what is recording in the previous 33 chapters he climbed up Mt. Nebo to meet his old friend, God. He never came back down. It doesn’t mention in the text what Joshua did or said but I imagine there were tears and waves of self doubt and moments of disbelief over whether he was actually ready to assume the mantle that God had placed on him. He probably wished for more time with Moses to just ask him a few more questions like “What do I do if they try that Golden Calf trick again?”, “Where did you find that cool staff and how can I get one?”, and “Is my beard long enough or should I let it grow some more?” But no, he was all by his lonesome. And then in verse 9 God’s Spirit fills Joshua. And the rest is history. I kind of have a hunch that along with that filling of God’s Spirit came the realization that God had given Joshua exactly the right amount of time to prepare for his new role. Nothing more; nothing less. I don’t know how I know that. Let’s just call it a hunch.

A New Leaf - Doug

So Mandy & I just got back from the LEAD conference put on by Willow Creek this past Thursday & Friday. No, we didn’t go to Chicago to attend the conference. For those of you who don’t know Willow Creek and the Senior Pastor, Billy Hybels, run a multi-site conference every summer called the Leadership Summit. The site we went to was in Lexington, MA and it was one of 50 some sites worldwide!

As with everything Willow does, it’s done with excellence. They line up world class speakers. This was the second time Mandy & I have had the privilege to attend. The first time we went was the summer between our two years in Bethlehem. Honestly, that summer the conference was probably the single greatest conduit of God’s strength for us to return and persevere through our 2^nd year of teaching in that context.

This year, besides Bill Hybels himself, (who is always fantastic) we heard folks like David Gergen, Tim Keller, Bono, and Tony Blair. Personally I was most inspired by Wess Stafford, President of Compassion international. He spoke of growing up as a missionary kid in Africa. He spoke of how the atrocious abuse (is there any other kind?) motivated him to dedicate his life to abolishing extreme child poverty. I sat there with tears streaming down my cheeks, amazed at how God can use even the most awful circumstances to bring about His wonderful purposes.

Beyond that the Leadership Summit is cool because it helps you to see what the Church is doing on a global scale. I get bogged down in day to day ministry and forget that the church has an amazing capacity to do good when it’s working correctly. Hybels is right on when he says “the local church is the hope of the world.” It’s so encouraging to see Christians making a difference in a hurting world. For example check out this site: http://www.kiva.org/. Now maybe you’ve heard of this before, but I hadn’t. It’s a site where folks like you & I can go and give a small loan to some entrepreneur on the other side of the world and help them stand on their own two feet in a small business! I also encourage you to check out http://www.goodafrican.com where you can learn about a really cool coffee company from Uganda.

Among the other things that I was inspired/convicted of this past week was about this blog. I’ve decided that I need to budget in time to my work schedule to blog. I’m going to give the blog address out to my teens this fall. I want this to be another way for them to connect with Mandy & I. Where we’re working in a bigger church now I know it’s going to be hard for me to build relationships with every student personally. I want this to be just one small way they can feel like they learn about Mandy & I and keep up with us.

I’ll leave off this time with a picture. It’s been a while since I posted an image to the site. Our family has grown. For most of the folks who read this blog you’ve probably seen our pictures on Facebook, but nonetheless this picture is too good not share every chance I get. This was taken on a recent trip to Grand Rapids, MI. I suppose we ought to change the name of the blog to TrackDougMandyandJordan!

Parenthood (Doug)

Sometimes we lay our plans out perfectly. We think we’ve got it all worked out. Then we forget that God’s timing is perfect and that He is the ultimate plan maker.

This past Tuesday, Mandy & I went to Leominster hospital for her regularly scheduled ultrasound. The doctor told us the Amniotic Fluid surrounding our daughter in the womb was too low. She said she thought it would be best if they took Mandy in that day for a c-section. We thought Jordan Grace Priore would be born on July 2nd. That was the day we had planned on having the c-section. That would be after I started my new job as the Interim Director of Youth Ministries at the First Congregational Church of Hopkinton, after we got switched over to the new insurance, after we had found a place to live etc. etc. My father-in-law has a little plaque on his desk that reads “Life is what happens while you’re busy making other plans.” Ain’t that the truth?

Jordan Grace was born on 6/16/09 at 6:16 PM. She was 7lbs 2 oz and 19.5” long. While we were busy making plans God gave us 7lbs 2 oz of life, love and joy. Both Mommy and Baby are doing fine. We all came home from the hospital today and as I type this both of my ladies are napping. Even though this won’t be our home for much longer it feels good to be home. We have lived for almost a year now in Fitchburg, MA. Since my new job is in Hopkinton we will be moving. We don’t know where to yet since there have a few snags in our housing plans. But I’m not getting to hung up on plans right now because as Jordan taught us sometimes God has other plans for us; plans that are much better (and even cuter) than ours. Thanks for all your prayers, love, and support!

Expecting!!

Mandy is close to 15 weeks along in her pregnancy! The due date is July 9, 2009. She's been feeling great with little to no sickness. She knows she has it good! We pray that the remainder of the pregnancy will go as smoothly. This past week we heard the heartbeat for the first time. It was one of the coolest moments of our lives. It sometimes doesn't seem real that we are going to be parents, but hearing the heartbeat definitely solidified our call!

We are reminded of Psalm 139: 13-14 which we read to our little one even now, "For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." We rejoice in this miracle!