Tuesday, July 31, 2012

A Spark of Hope

We FINALLY had a doctor's visit that left us with a positive outlook!  We are feeling so incredibly blessed!

Today, we met with a cardiologist at CHKD.  We had another fetal echocardiogram that resulted in 128 images of Gavin's little heart.  And his heart has improved significantly from our last fetal echo which was about a month ago.  The cardiologist told us that Gavin is now on the better end of the spectrum of Tetraology patients.  While his pulmonary artery was very small a few weeks ago and indicated that he would have to go into open heart surgery very soon after birth, that artery has grown today and has pushed back the surgical window to 4-6 months old!  The cardiologist also said that they are seeing good blood flow through that artery and he wouldn't expect Gavin to have the "blue baby" syndrome that characterizes most Tetrology patients.  It looks like, even at this stage, that Gavin's heart should be able to transport a good amount of oxygen to his lungs prior to his surgery.  And even better, that pulmonary artery may continue to grow over the next few weeks leading up to delivery.  So he will still require his open heart surgery, but it will not have to be immediately and his heart seems to be getting stronger!

His duodenal atresia surgery will still have to be within a few days of birth, but the fact that he will not have to endure that surgery within a short time frame of having undergone open heart surgery is such a blessing.  Now we can focus on one surgery at a time and one recovery at a time, and let his little body gain some strength before heart surgery.

The CHKD team has also offered to work hand in hand with Duke once we are set up with our second opinon there, to help ensure that both hospitals will be ready to deliver and care for Gavin no matter where Chris and I happen to be when labor starts.  After last week's appointment, Chris and I were discussing the fact that it didn't seem that Gavin would come home with us...ever.  We have been in a very dark and difficult place over the past week, and I swear I physically felt my soul break.

We went into today's appointment with that same darkness looming over us and our son's future, but today we saw a spark of hope in that darkness and it has absolutely renewed us.  We are still looking at some very serious health concerns and complications for Gavin, but we really needed that small glimpse of hope.  Our son DOES have a chance of coming home, and I can't wait to meet him and hold him and kiss him.  I don't care if his stomach has imperfections, if his heart has imperfections or if he has an extra chromosome.  I love this little angel so much already and I know he will be showered with love from all of his family and friends.

My aunt sent me a card a few weeks ago where she looked up the meaning of Gavin's name.  She said that Gavin means "white hawk of battle" and Walter means "ruler of an army" and that he sure sounded like a fighter!  My little man is fighting right now and I am so excited about that.  God has certainly been good to us.

Tuesday, July 24, 2012

General Surgeon Visit

Today, Chris and I met with a general surgeon from CHKD to discuss Gavin's gastrointestinal problems.  Gavin has duodenal atresia, which basically means he has a gap in his stomach that prevents food from getting to his intestines and being absorbed by his body.  Within a few days of being born, under ideal conditions, he would be taken into surgery to have sections of his stomach sewn together.  Until this procedure is completed, he is unable to eat so all nutrition will be provided to him through a central line.  It usually takes an additional 3-4 weeks before he is able to eat on his own, but this timeline is expected to be longer for Gavin as children with Down Syndrome seem to recover more slowly from this surgery.

The fact that Gavin also has Tetrology of Fallot complicates the procedure, because the doctors can't operate on his stomach until his heart is stable.  While the stomach issue needs to be dealt with in a matter of days because it prevents him from eating, that timeline will be pushed back until his heart is stabilized. 

The surgeon said that the combination of these two conditions and these two surgeries are very high risk in a newborn, and that out of high risk situations such as these in the operating room, that Caucasian males have the lowest survival rate.  We meet with the cardiologist next week, and he should be able to give us a more comprehensive picture of expectations at that time. 

But as of today, our reality is that Gavin will be a medical miracle to survive these surgeries.

Monday, July 9, 2012

The Beginning

I have decided to start a blog for our son, Gavin, in an effort to document the successes and challenges of his life for our family, friends and those who may not know us personally, but support and pray for our journey.

Chris and I have an 18 month old daughter named Lorelai.  She is a vibrant, strong-willed, enchanting baby girl who has brought an indescrible love and joy into our lives.  We are expecting our second child, Gavin in early November of this year, which will give us two babies in two calendar years!

At around sixteen weeks pregnant with Gavin, my quad screen came back positive for down syndrome.  Based on my results, I was given a 1 in 54 chance that our baby would be affected by the disorder.  We followed up  (at 20 weeks) with an ultrasound at Maternal Fetal Medicine in Virginia Beach, only to discover more markers indicative of down syndrome.  That same day, I took a blood test, called MaterniT21, which looks at the baby's DNA in my blood stream to determine if there are any additional chromosomes.  That test came back positive and has a 99.4% accuracy rate in determining Trisomy 21, which is the most common form of Down Syndrome.

Our ultrasound at Maternal Fetal Medicine also indicated a congenital heart defect.  At 22 weeks pregnant, we met with a fetal echocardiologist.  At this appointment, Gavin was diagnosed with Tetralogy of Fallot (TOF) which is a heart disease affecting four segments of his heart.  TOF is treated with open heart surgery, and often can wait several months, sometimes years, before operating.  However, Gavin's particular echocardiogram determined that open heart surgery is going to have to occur immediately after birth.  There is a critical concern with his heart's ability to pump any oxygen rich blood to his lungs.  His particular defect in this area of TOF is severe enough to require immediate open heart surgery.

During this same echocardiogram, we were told that Gavin has a narrowing in his intestines that will prevent any food/milk from leaving his body.  This will also require fairly immediate surgery, but the gastrointestinal surgery will have to wait until his heart surgery is completed and he is stable.  Until this second surgery is complete, he can only receive nutrition through an IV.  Our more immediate concern is that this condition may cause fluid to build up in the uterus and force us into labor prematurely.  Complications from a premature delivery will only make all of these obstacles more formidable for our little guy.

All of these factors together make us a high risk pregnancy.  We will be delivering at Sentara Norfolk so that the pediatric surgeons at CHKD can take Gavin immediately and work their miracles on saving his life.  This has been a terrifying, emotional and overwhelming time for our family.  Down Syndrome alone is a medical justification for termination of pregnancy.  The heart and intestinal conditions are each justifications for termination in their own right.  The combination of all three means that we are constantly met with phrases like, "If you choose to proceed with this pregnancy", "If you choose to have the baby", or "You will need to determine whether or not this is something you would like to continue with."  I strongly feel that this decision is any woman's, or couple's, right based on their own experience and beliefs.  But for us, we have seen Gavin all over the ultrasound.  And I can feel him kick and move all the time.  Chris and I have to fight for our son and ensure that we do everything in our power to give him the best life possible.  No matter what challenges he may be born with or encounter, we will not give up on him.  We will be there every step of the way and do everything we can to surround our son with unconditional love and support.  He may not be a "perfectly" healthy baby, but he is ours and he will be perfect in his imperfections.  I can't wait to meet him and hold him, no matter how long that takes.