June 18th Appointments

According to CAFCA and Dr. Chaves, Adriana's heart looks the same and is pumping beautifully. It's still "wait and see how the right ventrical functions after birth". However, she's growing at a faster rate than before!  Previously, she was in the 20-35% range for size, and now she's 51%--measuring 4 pounds and 4 ounces!  I'm looking forward to her arrival and it can't come soon enough! 

All Things Happen For A Reason

I found this story while doing some research for Adriana.  I'll warn you ahead of time--it's a bit emotional.  But somehow it's uplifting.  It's a story which depicts God carefully choosing parents for each child after much consideration.  Every year 25,000 couples become parents of children with Congenital Heart Disease (CHD) and I hope that they read this--along with other parents with special needs children.  We hope to live up to the standards of this narrative.

*  *  *

"Armstrong, Beth, son, patron saint, Matthew. Forrest, Michael,
daughter, patron saint, Cecilia. "Rudledge, Carrie and Adam, twins, patron saint, give her Gerard. He's used to profanity."

Finally, he passes two names to an angel and smiles, "Give them a special needs child."

The angel is curious. "Why this one, God? They're so happy."

"Exactly," says God. "Could I give a special needs child to parents who do not know laughter? That would be cruel."

"But have they patience?" asks the angel.

"I don't want them to have too much patience or they will drown in a sea of self-pity and despair. Once the shock and resentment wear off, they'll handle it.

"I watched them today. They  have that feeling of self and dependence that is so rare and so necessary in a mother and father. You see, the child I'm going to give them has his own world. They has to make it live in her world, and that's not going to be easy."

"But, Lord, I don't think they even believe in you."

God smiles. "No matter. I can fix that. These two are perfect. They have just enough selfishness. "

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If they can't separate themselves from the child occasionally, they'll never survive. Yes, here is a woman and a man whom I will bless with a child less than perfect. They don't realize it yet, but they are going to be envied. They will never take for granted a 'spoken word.' They will never consider a 'step' ordinary. When their child says 'Momma' for the first
time, they will be present at a miracle and know it!

"I will permit them to see clearly the things I see . . . ignorance,
cruelty, prejudice . . . and allow them to rise above them. They will
never be alone. I will be at their side every minute of every day of their life, because they are doing my work as surely as they are here by my side."

"And what about their patron saint?" asks the angel, pen poised midair.

God smiles. "A mirror will suffice."

May 29th Appointments...

Today Matt and I met with CAFCA and with Dr. Sanjay Kaushal.  At the first appointment with CAFCA we found that Adriana is now 2 pounds and 15 ounces.  She is in the head down position (vertex), and is still doing some crazy movements in there!  Steady growth and movement are a good sign.

Our second appointment was with Adriana's future cardiac surgeon, Dr. Kaushal.  This was the first time we've met him, and so he gave us the complete low-down.  Dr. Kaushal explained that depending on how Adriana's right ventrical grows and functions, will depend on the type of surgical procedures he will have to perform on her heart.  If her right ventrical proves to be healthy and successful in assisting blood flow, at around 6-8 months of age, he will surgically close the hole between the two ventricals.  This particular surgical procedure has proven to have over a 90% success rate, and it would be her first and last heart operation.  However, if her right ventrical is not sufficiently large enough, two different surgeries will have to be done.  The first will be at 6-8 months of age, and she will  have to have a band around her pulmonary artery to restrict blood flow to the lungs (to make sure blood disperses evenly throughout the body).  At around 3 years of age, she would have to have a Glenn Shunt.  These two surgeries have a 90% success rate.  Surgeons have been implementing these procedures for the last 20 years, so they are not new or unheard of.  Many of the babies who had these surgeries are now in their 20's, living good lives.  In the last 4 years, UMMC has not lost any of these children/babies and they continue to perfect these operations.

Dr. Kaushal reiterated that we will not know which path we'll have to take until after Adriana is born and she has a series of CT scans as well as echos.  We hope for the best.

Adriana is Steadily Growing...

Today Matt and I met with the doctors at the Center for Advanced Fetal Care and then soon after we met with Dr. Chaves (our pediatric cardiologist).  Adriana is now 2 pounds and 2 ounces--she's gained a pound in 2.5 weeks!  It's good to hear that she's growing steadily, and helps suppress some of our anxiety.  Dr. Chaves also said that her heart has not changed. She is still convinced that Adriana will be perfectly fine for the first few months of her life.  Most likely, she will not have to have a heart operation until she is an older infant.  Dr. Chaves also thinks that she will only have to undergo relatively simple procedures as she grows.  The specialists at UMMC will continue to monitor her growth and her dextrocardia as time goes on, since this such a rare condition.  Her exact cardiac make up is not comparable with anyone else's, but we are confident that she is in good hands.

Next appointments:

May 29th: Center for Advanced Fetal Care (Dr. Baschat) and Pediatric Cardiac Surgeon (Dr. Kaushal)

June 18th: Center for Advanced Fetal Care (Dr. Baschat) and Pediatric Cardiologist ( Dr. Chaves)

Photos and Backgrounds of Doctors Specializing in Pediatric Cardiology at UMMC, Found Here

No Genetic Defects!

The genetic counselor from The Center of Advanced Fetal Care called today with some great news!  All the results from the amniocentecis came back and revealed that Adriana has no chromosome abnormalities!  This is one less thing to worry about, and makes things less complicated!

More Confirmation

Today Matt and I made the long trip to Baltimore for what seemed like the 90th time.  During this appointment, the specialists at The Center For Advanced Fetal Care were hesitant to side with our pediatric cardiologist, Dr. Chaves, on a diagnosis.  So, they called in the "boss boss boss", Dr. Christopher Harmon, who is the Director of Maternal and Fetal Medicine and the Director of CAFC.  He was very personable and was able to explain each and every view of Adriana on the ultrasound, including her position and a definitive diagnosis of organ placement.  Dr. Harmon in the end agreed with Dr. Chaves--Adriana's heart is abnormally positioned, but her stomach, liver, and spleen seem to be in the correct places.  There are still some questions as to how her heart will form and how her blood with travel throughout her heart and body, however.  As I mentioned before, only time will tell.  Although this does not completely rule out heterotaxy, it does not seemed to affect her digestion system.

We also received some results of the genetic tests from the amniocentecis.  The fifty most common genetic disorders have been ruled out with 95% certainty, which is a very good thing.  Genetic disorders always complicate things. The "array" results have not come back, but it is a screen of much more rare chromosome abnormalities.

Our next appointment is May 14th with CAFC and then Dr. Chaves.

5th Anniversary Weekend Getaway

For our 5th anniversary, I (kind of) surprised Matthew and booked a secluded cottage on a lake for a weekend.  Not only was it nice to get away and have some alone time, we were able to take advantage of some mostly good weather and enjoy the great outdoors!  We went fishing, watched the dogs swim, had a camp fire, took advantage of the hot tub, and went out on a pedal boat for a bit.  Oh, and by the way, Yours Truly caught the only fish worth keeping... and I caught it within the first ten minutes of my pole being in the water!

She's a beauty, I know.  Unfortunately, we forgot about her tied to the dock.  When we returned to get her the next day, she was alive and well, so we decided to set her free.  We had planned to grill some steaks anyway (until it rained that evening)!

It was truly a gorgeous and quiet place.  Our 5th anniversary will forever be one of our favorites, I'm sure!  Thanks to my parents who drove up from North Carolina to West Virginia to watch our babies while Matthew and I were able to have some Husband & Wife time alone for the first time since Tateum was born!

The fireplace in the bedroom 

Relaxing hot tub on the deck right outside the bedroom

Ahhh, relaxing on the hammock

Air Dexter

Deer EVERYWHERE

Adriana at 22 weeks...

Better News...

On Monday April 16, we met with Dr. Baschat's office and Dr. Alicia Chaves.  Dr. Baschat was pleased to see that Adriana is growing, and although on the smaller side, she is within the "normal" range for her gestation week.  Her heart still seems to be doing well and pumping beautifully.  We received even better news when we met with Dr. Chaves.  She is a Pediatric Cardiologist who specializes in imaging and was able to draw a better picture of Adriana's abnormalities.  Dr. Chaves is almost 100% positive that Adriana does NOT have heterotaxy syndrome.  This is EXTREMELY good news because the syndrome involves so many complications, not just affecting the heart.  Instead, she believes that only Adriana's heart is tilted to the right (this is called "Dextrocardia") and does not think that multiple organs are displaced.  As we learned before, her right ventricle is smaller than the left, but her Great Arteries are not necessarily transposed.  Adriana has a hole in between her two ventricles (this is called "Ventricular Septal Defect"), as well as "Double Outlet Right Ventricle", meaning that both of her arteries could pull blood from the right ventricle because of the hole.  The tilt in the heart's position may also affect blood travel.  Her Tricuspid valve is  "straddling" both vetricles as well.  It is hard to say exactly how the blood flow will develop, once she grows and is out of the womb.  Only time will tell.  However, in the drawing, Dr. Chaves drew different surgical procedures that could turn out to be very good options for Adriana when she is older.  At 4-6 months of age, she could have a band put around the valve that goes to the lungs to make sure the blood disperses equally to the body as well.  At 2 to 4 years of age she may have to have a Glenn shunt put in.  Like I said, only time will tell and we shall see how Adriana's heart adapts.  Regardless, we have options and the outlook is much more optimistic for Adriana and she will not have to have heart surgery immediately following her birth as we originally thought..  Our little girl won't be able to participate in competitive sports or strenuous activities, but she'll be able to run around and play with her big sisters.  Here is the drawing of Adriana's heart, courtesy of Dr. Chaves:

Now, here is a picture of a normal heart:

Adriana Needs Your Prayers

     Our visit at University of Maryland Center for Advance Fetal Care did not go as well as we had hoped.  After hours of sonogram photographs and videos, Dr. Ahmet Baschat diagnosed Adriana with heterotaxy syndrome.  It is a condition where organs of the body form on the opposite side they normally form on.  Her heart will need to be operated on soon after birth because she has TGA.  Her left atrium is connected to her right ventrical (it should be connected to the left ventrical) and her right atrium to her left ventrical.  We are not sure how many other organs that the syndrome is affecting at this point in time.  Matt and I will be taking a trip to the hospital in Baltimore every two weeks, and then more often in the third trimester.  Multiple exams and test will be performed.  I have already undergone Amniocentesis to determine whether the heterotaxy was caused by a genetic defect.  We should have results in a few days.  I will also be induced there, to avoid Adriana being born too far away from the specialists at UMD.

For more info, click on the links in the text.