Friday, September 30, 2011

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.
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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

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