Tuesday, May 4, 2010
3 weeks to D-Day!
ANOTHER thumbs up from Brandt 35 weeks!
Mom with Baby Bump @ 36 weeks
Well, I am launching my first ever blog to keep friends and family posted on our little guy's status. Since little Brandt Ethan is due to make his grand entrance exactly 3 weeks from today, let me start by giving a brief history of his diagnosis and our experience with hypoplastic left heart syndrome to this point.
My husband, two older boys, and I were EAGERLY anticipating the 20-week ultrasound for baby #3 on Jan. 15 of this year. Mostly to find out if this was a girl or boy, of course, but also just for the older siblings to see the new life growing inside Mom. The technician did a great job including the boys in the original scan and sharing in the loud exclamations one way or the other when she announced this would be Boy #3 as well as Baby #3. But amid her description, she started asking odd questions regarding our family's history of heart disease, and we knew something was "off" when she asked if my husband could take the two boys back to the waiting room. She let me know right away she was pretty sure something was wrong with his heart, but that we would of course consult with the doctor as soon as she could look at the scans. Our doctor confirmed that while there was a possibility the pictures were just "blurry" at this stage, they strongly suspected a heart defect, specifically mentioning hypoplastic left heart syndrome (HLHS), with the possibility of "markers" for other abnormalities including down syndrome. Brandt, however, seemed determined to let us know things would be "ok." He gave us a very clear "thumbs up" at this original ultrasound.
Of course, our emotions were pretty much in shock, trying to process all the unfamiliar medical terms and implications of what they had let us know from what we thought was just a routine ultrasound. They got us in to see Dr. Grieg, a maternal fetal specialist here in our area, and he confirmed the congenital heart defect as well as discussing further options for testing to confirm or rule out additional defects. We decided at that point -- since terminating the pregnancy would NOT be an option, and that further testing would most likely not affect treatment options at this time, to decline further testing. Dr. Grieg's office also coordinated follow-up visits with a pediatric cardiologist who could offer additional diagnosis and treatment options based on echocardiogram information with detailed scans of baby's heart.
Following Dr. Rauniker's diagnosis of the HLHS with additional heart complications, we faced many decisions. This defect is fatal if untreated, as the specialists let us know right away. However, much progress has been made in the past 20 years to offer surgical alternatives to heart transplant. I began to research the program his office coordinates with at the Medical University of South Carolina in Charleston. The highly-specialized surgical and follow-up care teams there are among the best in the country. Combined with the follow-up of a specialized pediatric team here locally, the success rates for a structured surgical reconstruction of at least 3 surgeries have been very high. Dr. Rauniker, his team, and the MUSC team recommend this rather than transplant if possible due to a variety of factors. I have attached a link here to a series of videos done by the Children's Hospital of Philadelphia regarding HLHS -- I found them on another "heart mom's" blog, and they are very helpful.
Overall, we have had a deep sense of God's plan in all of this, and peace that each step of the way He already knows. We chose Brandt's name in part because we both liked it, and in part because of its meaning "fiery beacon or torch." His middle name Ethan means "firm" or "steadfast" and we pray that this little guy will be just that -- a beacon of hope and firm confidence in God's goodness. Family and friends both have come around us with amazing support. I cannot even begin to enumerate the offers of help and kindness that have come flooding in, and he is not even here yet! Most importantly, PRAYER. Many around the globe have let us know that they and their church groups are holding us up in prayer. We understand the risks and challenges involved in both the surgeries Brandt will face and his follow-up care. And yes, they are mind boggling, still! But we know we are "more than conquerors through Him that loves us" -- how can we lose with a team like this?!?
Our first visit to MUSC March 10 confirmed our decision to go forward with Dr. Raunikar's treatment recommendations. The surgeons and doctors we met with there were amazing and thorough -- they confirmed the HLHS and "named" the additional defect as an unbalanced A/V Canal. This defect along with a microscopic aorta will pose additional risk with the first of the three scheduled surgeries. It is called the "Norwood" operation. The follow description of the surgery comes from an informational site sponsored by the Children's Heart Center at Johns Hopkins University.
In the Norwood Procedure, a major blood vessel to the body (aorta) is constructed from the base of the pulmonary artery and the narrowed aorta, indicated by the presence of the pink patch in the animation.In addition, a small tube made of Gore-Tex (known as a Modified Blalock-Taussig Shunt), is inserted between the branches of the pulmonary artery (PA) and a branch of the aorta to ensure blood flow to the lungs after the PDA closes.
Specifically to Brandt's situation, I will plan to deliver him in Charleston so we can stay with him after my required c-section until his first surgery is scheduled. I am not showing any signs of pre-term labor for which we are thankful, and the c-section is scheduled May 25. We do ask for your prayers that he will grow as much as possible between now and then . . . I have twice a week monitoring of his activity and growth. The last measurements estimate him to be just shy of 4 lbs, and we would love to see him go full-term and gain an extra 4 lbs before birth to help sustain him through all the testing and surgeries to take place his first week of life. The following is an excerpt of an e-mail update I sent out after we knew a little more what to expect from the surgeons in Charleston:
Before the c-section is even complete, the PCICU staff will stabilize him and start extensive tests including catheters placed in the umbilical cord. Within two hours of birth they will medicate to keep his arterial duct open and get a direct echocardiogram. The surgeons feel by two days they’ll ensure his condition is operable and finalize surgery plans, for no later than 4 to 6 days after birth. He won’t be able to eat at all before the surgery, and may have to be on a ventilator. We can hold him the morning of surgery only. During surgery, he’ll be on heart and lung bypass (life support) machines, and possibly afterward, depending how it goes. Dr. Scott Bradley (with amazing credentials and experience to his record according to my research and everyone's testimonials) will perform the surgery. Brandt’s chest will be open 24 to 48 hours after to watch the extreme swelling, fluids and possible infection. Then, they can gradually introduce feeding tube breast milk to activate his gastro system. Most hypoplastic babies struggle to eat. The heart team there want him able to go home as soon as possible, but the rehab from surgery and medications still requires a minimum of four to six weeks. Some babies have to go home with a feeding peg (inserted into the stomach). And quite honestly some can’t go home between the first and second surgeries at all. The second surgery would be scheduled around 4 to 6 months of age. So we earnestly pray for miraculous healing!!
OK, enough already of my first post. Hopefully this blog will be a great way to keep everyone who is interested up-to-date without writing a whole book on a regular basis!