Week 23 - First Cardiologist Appt

We had 2 ultrasounds yesterday (9/3). The first ultrasound was scheduled as a follow up from the one we had 4 weeks ago.  The purpose was to review the baby’s growth and to check for any other abnormalities.  We found out that the baby has gained 7 oz in weight (good).

The baby still has the three areas of abnormalities that were discovered 4 weeks ago (stomach, hands, heart).

The stomach has a narrowing which creates what they call the “double bubble” (duodenal atresia). The surgeons will need to perform surgery to remove the narrowing and connect the two parts together. He most likely will not be able to eat until this surgery is performed and has healed. Fortunately, the baby can survive using IV’s until his stomach can heal.  The healing process can take up to 5 days.  The doctors are anticipating for him to go to Phoenix Children’s Hospital within 24 hours of being born for this first surgery.

The arms are continuing to develop as we have expected.  They are still 20% shorter than normal and both forearms are curved.  His left forearm is still missing the radius bone and his left hand is missing his thumb.  Most likely, he will go thru physical therapy to learn to gain the maximum mobility of his hands and arms.

The second ultrasound we had yesterday was with the cardiologist.  He took an in depth look at the baby’s heart to see how the heart is forming and the next steps.  The entire ultrasound and then consultation took several hours so here is the digest version of the findings:

The baby has several areas in his heart that will (outside of a miracle) not change when the baby is born.

**Medical Terminology** (See below for normal people English)

1. DORV-double outlet right ventricle.
2. D-TGA- Transposition of the great arteries.
3. Mitral Valve Atresia-there is a closed valve that is not formed.
4. Hypoplastic left ventricle-small and very under developed.
5. VSD-ventricular septal defect.

**Normal English**

The baby has multiple congenital heart defects that will require two to three surgeries depending on what happens at birth.  The baby will never have a fully functional heart.  He will have to depend on the two remaining functioning chambers of his heart.  The left ventricle and left atrium are not connected to each other or to the proper arteries to pump blood to the body.  The baby’s first surgery will happen approximately within 1 week of being born (after the stomach surgery).  The second/third surgery depend on what happens at birth and as he develops.  The cardiologist said that the baby will always be on medication with the heart defect.

One obvious question that we have is the success rate on the surgeries.  The cardiologist felt optimistic and stated that he has a high chance of having a successful surgery.  This means that if the surgery is successful, we will still need to monitor the baby closely.  Praise God!

We will have both of these ultrasounds every four weeks until the third trimester at which time we will have them every two weeks.

Since this baby will need immediate care by specialists and surgeons, we are going to probably induce so that all of the necessary doctors are on standby.  Since he is full term right around Christmas, we need your prayers to determine what is best for this baby and for our two boys at home.  We don't necessarily want to be in the hospital during Christmas.  

We really appreciate all the prayers. We can feel the power of God working thru us as we go thru this process.  Many have reached out to us with hugs, tears, prayers and comfort.  Thank you!  

If you see us, don't be afraid to give us a hug.  We will hug back.  Don't be afraid to cry with us.  We have done plenty of that.  Please don't be afraid to ask us about it.  We are encouraged when people ask.  We have a long road ahead but with all of the support we have we can make it.