Cheesesteaks and Pirate Hooks

After our last pediatric cardiologist appointment on July 16th, our doctor referred us to the Children's Hospital of Philadelphia (CHOP) to get a second opinion on Beau's heart.  We had a full day of testing and meetings scheduled on August 14, 2013.

When we arrived in Philadelphia the evening before, we needed to check something off our bucket list - eat a REAL Philly Cheesesteak sandwich!  Many people say Pat's and Geno's have two of the best but both of the reception ladies at the hotel said Jim's Steaks was EVEN better!!!  So we headed into Philly to enjoy the real deal - cheese whiz and all!!  

Our day at CHOP began with a fetal echo with the sonographer and she took every image and measurement of Beau's heart. Immediately following, we met with a cardiologist and a nurse coordinator.  They confirmed all the things our doctor at Portsmouth Naval Medical Center has diagnosed- AVSD and TOF.  She even said that she believed Beau should not be blue at birth, that he should pink up normally.  All the blood flowing out of his pulmonary valve (toward the lungs) is going in the right direction!  She does not think he will need any immediate surgery as long as the heart continues to work as it is now when Beau is on his own.  They gave us the name of the chief of cardiac surgery who we will contact between 4-6 months after Beau is born for his full heart surgery.

Our next stop was with another sonographer who did a full ultrasound on every inch of Beau's body.  We got to see everything from his fingers and toes to all the hair on his head!  The ultrasound took about an hour and a half (with two snack breaks to get him moving) and she got all the pictures she needed.  She took the picture below of Beau in 4-D and of course we loved seeing his little face!  We asked, "where is his hand?"  as we just saw her count all his fingers.  She told us with the multiple pictures the 4-D takes, it cut off his hand because it was too close to the camera. Well, we thought it would be a funny joke to send the picture to our families and tell them we were going to need a pirate hook for Beau's arm!!!  We were dying of laughter, tears rolling down our faces in the ultrasound room.  Needless to say, our family did not think the picture message was as funny as we did!!!!! 

 

Stop number three was with the genetic counselor.  She went through our family history and gave us some information on the developmental milestones of a child with Down Syndrome. She did tell us the chances of us having a second child with Down Syndrome would be about 1%. 

Next we met with a perinatologist who reviewed all the findings from both ultrasounds.     

• The sandal gap was still evident in one, if not both, of his feet. 
• His femur (upper leg bone) was measuring about 2 weeks behind (27 weeks) and his humerus (upper arm bone) was measuring about 3 weeks behind (26 weeks).  As many children with Down Syndrome are shorter in statue; these measurements are common.
• Beau has the middle bone in his finger but it is smaller than normal.  Many children with DS have clinodactyly which is a curvature or bending of the pinkie fingers inward which is caused by either a small or missing middle bone in the 5th finger.
• As of now, no brain or stomach abnormalities! 
• No additional skin was visible behind Beau's neck.
• Beau has a nose bone!  Some children with DS are missing their nasal bone which gives them a more flat nose.
• Heart rate was 143 beats per minute.

The biggest news we received in Philadelphia is that the doctors there also believe Beau can be delivered at our home hospital in VA.  This was such a confirmation from the Lord! 

Back in Virginia, on Friday, August 16th, we had a follow up appointment with our high risk OB and a walk through the NICU.  We had a chance to talk with our pediatric cardiologist and she doesn't believe Beau will need to stay in the NICU at all but the tour was a nice "back up" incase things would be more complicated at his birth. We also got to meet with a neonatologist and answer questions but ultimately hope there will be no need for Beau to be seen by their team. While we visited the NICU, we also met sweet Baby Isaac... the newest miracle from the Lord, born to another family at our church.

In the coming months appointments will increase as they watch Beau closely to make sure he stays on track.  Children with Down Syndrome have a high rate of still birth so beginning at 34 weeks, Marisa will take weekly non-stress tests to monitor Beau's activity.  At 35 weeks, we will visit the pediatric cardiologist (in VA)  again to confirm that Beau's heart is still growing and flowing as it is now. 

We thank you again for partnering with us in praying for Baby Beau.  You can be praying for: 

1. Beau's heart and other internal organs as they grow and mature; The Lord's healing if that is part of His plan
2. Understanding at our places of employment as doctor's visits increase
3. People to see God's goodness through this pregnancy, Beau's life, and our testimony

And that's 'Arrrrrgh' she wrote!