We decided to write this blog after realizing the time consuming task it is to repeatedly make a gazillion phone calls after we return from the doctor's office each week. So we want to start from the beginning and fill in everyone who is supporting us. Before that, we want to thank you from the bottom of our hearts for lifting our little man and family in your prayers. We decided to share his name with everyone knowing the Lord calls us to pray specifically by name. So....Beau Maverick Muhs it is (pronounced Bo)!
On June 17th we went to the doctor for our almost 21 week ultrasound. This was the appointment where the doctor filled out our gender reveal note for our surprise the coming weekend. The doctors were unable to 'clear' the heart at this ultrasound because they could not get the pictures they needed. We had our second ultrasound appointment on July 1st and again, the doctors were unable to clear the heart. At this point we tried to stay calm but began to wonder..... The next morning our doctor in OB called to tell us the wall between the atrium and ventricles didn't look normal. She then put in a referral for us to be seen in Maternal Fetal Medicine (MFM).
We had our appointment up in MFM on Tuesday, July 11th. They did a higher level ultrasound and the high-risk OB doctor told us that Beau has a septal defect, meaning there was a hole in his heart at the area she called the atrioventricular crux - where the atrium and ventricles comes together in the middle. The doctor also said often defects like this are linked to chromosomal abnormalities as well. She gave us the option to have an amniocentesis but we declined since it is an invasive procedure. However, there is an alternative blood test that has very accurate results as well so we opted for that route. These results will not come back for a couple weeks. After this appointment we were referred to Pediatric Cardiology to get more extensive testing done on his heart.
Yesterday, we had our appointment in Pediatric Cardiology and our doctor was so informative and answered all of our questions. She even drew pictures for us to understand. I will try to explain her actual diagnosis in as understandable terms as possible.
Beau has two defects in his heart:
1) Atrioventricular septal defect (AVSD) - There is a hole between the top two chambers of the heart and the bottom two chambers of the heart. There is also one large atrioventricular valve rather than two separate valves. This means his red and blue blood is mixing together freely in his heart. The body receives less oxygenated blood than it needs.
2) Tetralogy of Fallot (TOF) - He has narrowing under the pulmonary valve (pulmonary stenosis). This is causing a blockage of outflow from the right ventricle, through the pulmonary valve to the lungs. The aorta is lined up just over the hole between the bottom two chambers of the heart - and not over the left ventricle as it should be.
Whew! Did you get all that? What this means is his oxygen saturation will be tested after delivery and if it is within a healthy range no immediate surgery will be necessary. If no complications arise, Beau will need surgery around 5-6 months after birth. Surgery will create the 4 separate chambers of the heart, widen the pulmonary valve, and separate the AV valve into two.
Our next step is to visit Children's Hospital of Philadelphia (CHOP) to get a doctor recommended second opinion of what she doctor saw yesterday. As of right now, the doctor believes that I will be able to deliver here at our home hospital pending there are no additional changes in the coming weeks. If the doctors at CHOP believe that I need to deliver there, then plans will change. Our scheduled trip to PA is for travel on August 13th and a full day of testing on August 14th.
Thankfully the rest of baby is growing healthy. He was 1 pound, 5 ounces at our appointment last Monday, with a heart rate of 142 bpm yesterday. He is measuring in the 30th percentile. The doctor told us today his little heart is just a small 2 cm across! Amazing the technology they have to see inside something so tiny.
As of now, we are continually trusting the Lord with all this news and what the future may look like. This journey is going to be one day at a time and one appointment at a time. We are doing very well and we pray this pregnancy and baby will bring glory to God as He shows His faithfulness. I continually keep telling others that the Lord is GOOD, all things from Him are GOOD, and we know He has prepared a future where He will provide all we need. Our Mighty God is in the business of healing miracles and we know that Beau is IN HIS HANDS.
