It all began with my regular 18 week ultrasound. The sonographer couldn't get the necessary measurements because of the baby's position, so 4 weeks later I had a second ultrasound. During this ultrasound she spent an awful lot of time focused on the heart. I asked if she typically spent that amount of time, her reply was yes. After that ultrasound I saw Dr. Huish and he said they would like to refer me to a pediatric cardiologist for an echocardiogram (echo) and an electrocardiogram (EKG) due to an "abnormal cardiac axis". Four weeks later (Sept. 25) I had these tests done.
We entered full of smiles and a little anxious, but in good spirits. Why have stress when this is just a precaution and our baby is perfectly healthy? After an hour and a half echo and listening to the doctor and sonographer discuss between themselves, all the while displaying furrowed eyebrows and head shaking, we were ushered into an exam room for the news. The first words out of his mouth were "Your baby will need surgery". WHAT! I thought we were just being cautious?!?! Not so. There were several findings: baby doesn't have a pulmonary valve (the valve on the right side of the heart that allows de-oxygenated blood to pass through to the pulmonary arteries) , because of this the right ventricle is dialated (enlarged) making it incompetent. Because of the absent pulmonary valve and dialated right ventricle, the blood is forcing the pulmonary arteries to enlarge. The dialated pulmonary arteries may be resting on the babies airway, making it difficult to breath or allow the lungs to fully inflate. He also noted, but was uncertain, of a hole between the left and right ventricles (ventricular septal defect or VSD) . He gave us a name for the said conditions and discussed treatment. Open heart surgery very soon after birth and then again down the road as baby grows. We walked out of there with heavy hearts and tearing eyes. Not our sweet baby!
The next day, Friday, Dr. Huish asked to see me. He explained that I'm a high risk patient and he will no longer be delivering me and that we did nothing to cause baby's heart condition. I asked if he would please do a quick ultrasound so we could find out the sex. I previously didn't care at all what we had, either way we won, but suddenly I was desperate to know! His sonographer was such a dear, she took me into her room, gave me a huge hug and quickly found what I was dying to know, IT'S A GIRL! The tears began...again! Yea it's a girl, we love girls! Bows, bracelets, pink, pink, pink!
The next Wednesday I saw Dr. Huish again for blood work and Thursday we met with the perinatalogist (high risk OB). I had a 2 1/2 hour level 2 ultrasound done as well as an amniocentisis, which hurt so much more than I anticipated! Friday we met again with a sonographer, perinatalogist, and a radiologist to learn the fate of our girlie. After another 45 min. ultrasound we were sat in Dr. Ponkey's office (our perinatalogist). She confirmed everything the pediatric cardiologist had said: she has a severe and rare congenital heart defect called Tetralogy of Fallot with Absent Pulmonary Valve Syndrome. Also, her heart lays at a 90 degree angle rather than 45 degrees, but found no physical reason why which means it's just how her body formed. We also got the preliminary results back from the amnio, she tested negative for trisome 13, 18, and 21. There is still a chance there are chromosomal defects and we'll learn later this week if there are issues. The doctors are optimistic it's only her heart as she is measuring in the 60th percentile, above average. All things considering, we feel rather optimistic.
At birth, and they let me go full term, they'll determine how soon she'll need her surgery. Ideally they'll send her home to gain weight and get stronger for her surgery and then a couple months later do it. OR if she's having a difficult time breathing, or if the heart requires immediate surgery, they'll do it before she is sent home. That means there's a small chance we can have her home for Christmas!!
My doctor appointments have been crazy! I had 3 last week, 1 this week, and 3 next week. When I hit 32 weeks I'll have at least 2 appointments a week as she'll have to be very closely monitored. They'll do ultrasounds at every appointment as well as other tests. There's the pediatric cardiologist, perinatologist, regular ob, surgeons, and NICU appointments filling up our already busy weeks. Her little heart can be patched and she should be able to be a normal little princess. She will have to have additional surgeries as her body grows and we'll deal with that when it happens. In the meantime, we can't wait to have her in our family no matter what is wrong with her little body. We are thankful for the priesthood, faith and prayers. We know Heavenly Father sees the bigger picture and we pray that picture has her on earth for a very long time!
